stephanie - 12/28/00 18:29:41
My Email:eina_pets@hotmail.com
Home State - Country:: Oregon - United States of America
Child(s) Name - Birthdate: none
Heart Defect(s): none
Hospital - Surgeon:: none
Surgery Name(s) - Date(s):: none
Picture Link or Favorite Heart Site: none

Comments:
I have recently been given a project to do on a birth defect by my Family Living teacher. We have the task of finding a birth defect to research and write a full report on. I happened to come across hypoplastic left heart syndrom in a site I was looking at and it interested me because I had never heard of it before. I had some trouble finding sites and decided to ask my teacher where to find some info. Interestingly enough she has never heard of it in the many years she has been giving this assignment. So, I have been trying to find sites on this for a while and every site I come across says the same thing, and untill your site all of them said that the only cure was a heart transplant. Your site helped me a lot and it will make a few more people aware of this birth defect. I am going to use your son's story in my report if that is alright with you and if you would like I could send you a copy of the report. I don't know if you would want it but some people like to have those kinds of things. Thanks for creating this site, it really helped me out. Sincerely, Stephanie

JIm and Sue Cavaletto - 12/23/00 22:06:09
My Email:dodgers@madnet.net
Home State - Country:: CA - USA
Child(s) Name - Birthdate: Liam - 12/07/00
Heart Defect(s): HLHS
Hospital - Surgeon:: Valley Children's - Dr. Petrossian
Surgery Name(s) - Date(s):: Norwood -12/11/00

Comments:
Scariest thing we have ever been through. Liam made it through his first surgery exceptionally well and we're hoping he continues to recover at a fast pace. These babies are tough! (Far tougher than mom and dad who still jump at every little noise and heck to make sure he's still breathing every five minutes)

Julia - 12/22/00 23:48:23
My Email:candykiz@grnco.net
Home State - Country:: Arkansas
Child(s) Name - Birthdate: Nicholas Cameron - 12/19/00
Heart Defect(s): Hypoplastic Left Heart Syndrome
Hospital - Surgeon:: Children's Hospital, Little Rock, AR
Surgery Name(s) - Date(s):: ?????

Comments:
I appreciate your site, it helped ease some fears that I had about this heart condition. Our friends whose child this is thought he was healthy until the day of release when a nurse discovered his coloring had changed and called the physician on call. He losed his office and raced to the hospital in time to give Nicky some heart medication even though he didn't know what the trouble was once he was stablized he was flown to Little Rock where they discovered the hypoplastic and were given the same options oshua was thankfully the survival rate is good. Please feel free to write me if you have more stories to share regarding this condition.

Angela Miler - 12/20/00 15:08:25
My Email:angelamiller78@hotmail.com
Home State - Country:: Oklahoma, USA
Child(s) Name - Birthdate: None
Heart Defect(s): None

Comments:


Jennifer - 12/19/00 18:51:22
My Email:jennicase@yahoo.com
Home State - Country:: PA and now VA
Child(s) Name - Birthdate: Michael, 11/20/98 (nephew)
Heart Defect(s): HLHS
Hospital - Surgeon:: Dupont, DE/Dr. Norwood

Comments:
Michael is a very healthy 2 yr. old thanks to Dr. Norwood and his procedure. He is moving along steadily in his physical development. I am glad to hear your little boy is doing just as well as our MIchael.

Bill Rodebaugh - 12/13/00 05:49:16
My Email:lrodeb8685@aol.com
Home State - Country:: Pennsylvania
Child(s) Name - Birthdate: Andrew - 12/6/00
Heart Defect(s): HLHS
Hospital - Surgeon:: CHOP - Children's Hospital of Philadelphia
Surgery Name(s) - Date(s):: 12/14/00

Comments:


Andrea Helwig - 12/13/00 03:50:22
My Email:paulandreah@aol.com
Home State - Country:: Watertown SD
Child(s) Name - Birthdate: Raiden 8-1-2000
Heart Defect(s): HLHS
Hospital - Surgeon:: U of Michigan
Surgery Name(s) - Date(s):: Transplant(11 days)Dr. Ohye

Comments:
I am praying for you and your family.

twe tarlinton - 12/12/00 04:32:28
Home State - Country:: australia
Heart Defect(s): HLHS

Comments:
I am now 21 weeks pregnant, we do not know our baby will be boy or girl yet. But reading Joshua's story, I feel better, there is hope for our baby. We will do whatever we can for our baby survival. Thank you very much.

David Curiale - 12/07/00 02:18:17
My Email:djcyanks1@aol.com
Home State - Country:: ny, usa
Child(s) Name - Birthdate: 11/29/00
Heart Defect(s): H.L.H.S
Hospital - Surgeon:: Cornell
Surgery Name(s) - Date(s):: Dr. Mosca / Columbia Presbyterian

Comments:
our daughter was diagnosed the day after birth by the cardiologist team @ NY Methodist. She had the Norwood Procedure on Monday Dec,4,00.She is recovering well. She is a miracle child! thank the LORD!!!!!

Missy Shero - 12/06/00 12:30:16
My Email:MOMMAJUBBA@YAHOO.COM
Home State - Country:: PA
Child(s) Name - Birthdate: KAITLYN
Heart Defect(s): HLHS
Hospital - Surgeon:: HERSHEY MEDICAL CENTER
Surgery Name(s) - Date(s):: NORWOOD2/2/00; HEMIFONTAN 11/21/00

Comments:
KATIE HAD HER 2ND STAGE SURGERY 2 WEEKS AGO AND IS DOING GREAT. THIS SITE IS GREAT TO READ ABOUT OTHERS WHO ARE EXPERIENCING THIS BUT I WOULD LIKE TO HAVE AN UPDATE ON YOUR SON. IT HAS BEEN ENCOURAGING TO SEE THAT HE HAS DONE WELL SO FAR BUT HAVEN'T HEARD ANYTHING CURRENT. PLEASE EMAIL OR UPDATE WEBSITE. IT HELPS OTHERS TO SEE WHEN A CHILD WITH HLHS CONTINUES TO THRIVE. GOD BLESS!

Jan Coventry - 12/05/00 11:30:31
My Email:janet.coventry@hse.gsi.gov.uk
Home State - Country:: Liverpool UK
Child(s) Name - Birthdate: Conor Coventry d.o.b. 30.7.98
Heart Defect(s): HLHS
Hospital - Surgeon:: Southport

Comments:
It is nice to read about children with HLHS doing so well. Unfortunately my Conor died aged just 37 hours. HLHS was not diagnosed in our case until after Conor died, he just started developing breathing difficulties. Southport Hospital obviously did no recognise the signs and were treating him for an infection. I miss my son with all my heart and although I have healthy 6-year old twins and a baby girl age 16 months, I will never forget my son. Good luck to you all.

dawn caronna - 12/03/00 17:15:56
My Email:heartsong272@aol.com
Home State - Country:: New York
Child(s) Name - Birthdate: Victoria
Heart Defect(s): hypoplasticleftheartsyndrome
Hospital - Surgeon:: Columbia Presbyterian Dr. Ralph Mosca
Surgery Name(s) - Date(s):: Norwood

Comments:
Your site was a real encouragement my niece was just diagnosed at birth and is scheduled for the surgery. May God continue to Bless your family.Please keep my niece in your prayers.

Jerry Mallari - 12/01/00 22:53:10
My Email:jerree_la@yahoo.com
Home State - Country:: Arcadia, CA
Child(s) Name - Birthdate: Isaiah Daniel - 12/24/98
Heart Defect(s): Hypoplastic left heart
Hospital - Surgeon:: Children's Hospital, LA - Dr. Vaugn Starnes
Surgery Name(s) - Date(s):: Norwood: 1/3/99, 6/99, 1/01

Comments:
Hi Joshua's dad, My son Isaiah was also born with HLHS. We did not know that he had this until we took him to the hospital when he was 6 days old because of slight jaundice. I know exactly how you feel - it was the most distraughting thing that ever happened to us. It akes you wonder why it had to happen to a helpless child. I am glad however that me and my wife opted for the 3 stage Norwood - I would like to enjoy every waking moment with my son regardless of what his condition is. I'm hoping that our children will ive long and fruitful lives!!!! Best regards, Jerry

Ellen Clark - 11/27/00 19:47:36
My URL:http://www.ellenspot.com
My Email:ellen@ellenspot.com
Home State - Country:: Ohio
Heart Defect(s): HLHS

Comments:
I came across your site while trying to find information about this condition. Friends of mine just had a precious little girl last week who has this heart disorder and I am encouraged to read so many success stories about the procedure she will be underg ing. I enjoyed your photos; thanks for sharing your story so that others who have no experience with this situation can learn from you. All my best to Joshua and the whole family.

Pam Biehn - 11/27/00 16:20:15
My Email:Pamela_Biehn@bluecrossmn.com
Home State - Country:: Minnesota
Child(s) Name - Birthdate: Brandee Biehn/11-2-77
Heart Defect(s): Congenital Heart defects
Hospital - Surgeon:: Mayo Clinic/Rochester,MN
Surgery Name(s) - Date(s):: 9/1/78-Open Heart Surgery

Comments:
I lost my daughter the day following surgery - but, I have never forgotten what caused her death. I keep looking for an answer to "what went wrong" following her surgery. Thanks for sharing a "happy outcome"!

A.J. Leather - 11/24/00 02:40:29
My Email:TheBook124@AOL.com
Home State - Country:: NJ

Comments:


Patricia Wiseman - 11/20/00 22:57:02
My Email:wiseman_patricia@hotmail.com
Home State - Country:: Maryland, USA
Child(s) Name - Birthdate: Cristopher Wiseman-Tate November 11, 2000
Heart Defect(s): Hypoplasti Left Heart Syndrome
Hospital - Surgeon:: Philadelphia Childrens Hospital, Dr. Thomas Spray
Surgery Name(s) - Date(s):: First of Norwood Procedure
Picture Link or Favorite Heart Site: Unknown as of yet

Comments:
As I am sitting here at the hospital, using the internet, I came upon this site and it warmed my heart! My grandson was diagnosed a few hours after birth and was flown here for surgery. So far he is doing excellent! His surgery was performed to perfect on by Dr. Spray and just under a week he is off of everything (medications, IV, oxygen, etc.) except for being monitored. I am praying that my precious, special little grandson continues to grow well and breeze through this and live a happy, wonderful li e. Anyone reading this your words and thoughts of encouragement are needed and welcomed. I pray especially for our special heart children that God gives us knowledge and instructions for our children.

Emileigh Jo Rasmussen - 11/17/00 19:58:07
Home State - Country:: Victor Idaho USA
Child(s) Name - Birthdate: Joseph William 6-4-00
Heart Defect(s): HLHS
Hospital - Surgeon:: Primary Childrens
Surgery Name(s) - Date(s):: Norwood 6-12-00 Glenn 11-16-00

Comments:
Your story is awsome! Joseph is doing really well. Thank you for sharing your story with us. Storys like that give us new parents going through the same thing hope. good luck and God bless you.

Emileigh Jo Rasmussen - 11/17/00 19:39:10
Home State - Country:: Victor Idaho USA
Child(s) Name - Birthdate: Joseph William 6-4-00
Heart Defect(s): HLHS
Hospital - Surgeon:: Primary Childrens
Surgery Name(s) - Date(s):: Norwood 6-12-00 Glenn 11-16-00

Comments:
Your story is awsome! Joseph is doing really well. Thank you for sharing your story with us. Storys like that give us new parents going through the same thing hope. good luck and God bless you.

Loraine & Henry Coe - 11/17/00 05:23:16
My Email:hcoe@snet.net
Home State - Country:: Connecticut
Child(s) Name - Birthdate: Sydney Alexandra Coe - 11/10/2000
Heart Defect(s): hypoplastic left heart syndrome
Hospital - Surgeon:: Manchester Memorial Hospital
Picture Link or Favorite Heart Site: This is my first site

Comments:
Our grandaughter, born to our son Kevin & his wife Trish,was their pride and joy. On 11/12/2000 they took their precious little treasure home. On 11/14/2000 Sydney started having difficulty breathing and was taken to her the hospital emergency room where he presented with a temperature of 94.7 degrees. The ER physician told them that they were paranoid first time parents and that they were just looking for something and that their little angel was fine & discharged them. Not long after, my daughter-in-la was still concerned and called her pediatrician and was told by the secretary that she would make an appt.with the lactation counselor for the next day. Trish insisted that she speak with the pediatrician where she was given an appt. @ 4:15 PM (it was no approx 2:PM). When she reached the pediatrician's office, Sydney's temperature had plumeted to 92.4. When the pediatrician saw her, she immediately called 911 and rushed the baby & her mother to Newington's children's Hospital where she went into arrest. At this point my son and his wife still had no idea what the problem was. Their little one had never been diagnosed with ANY problems even tho Trish had had a 20 week ultrasound. The were under the impression that the baby had a severe infection. After thorough evaluation she was put on a intubated and was administered by several specialists who placed IV needles in several parts of her body. They had tried to stabalize her but after 6 hours, her little heart was deteriorating from working so hard. Sh left her heartbroken parents at approx. 12:35 AM on 11/15/2000 ... she was 4 days 6hours old. This has been so devastating for them and the most difficult event that we have all had to go thru. My heart goes out to all of the parents and their families ho have ever had lost a child. The funeral for our little angel is Saturday and I ask that you keep us all in your prayers. They (as well as their families & friends) will get through this. They have wonderful close families and wonderful friends but th y are shattered because of the loss of their little girl. The loss was compounded because of the fact that they had no knowledge of the defect until little Sydney went into crisis ... had they known, who knows if the outcome would have been any different however, they would have at least been prepared and would have had the knowledge and opportunity to see specialists in in the field. Because of their situation... coping has been more than difficult. Thanks for listening... and we value your prayers. We are sadden by the loss of our second grand daughter & the helplessness we feel for the grief that our son & daughter-in-law are going through. Grandma ("MiMi") & Grandpa

Maribeth Gillis - 11/16/00 20:17:46
My Email:Gillis2003@aol.com
Home State - Country:: Dallas, TX
Child(s) Name - Birthdate: April 30, 1985
Heart Defect(s): HLHS
Hospital - Surgeon:: Children's Hospital Of Philadelphia - Norwood
Surgery Name(s) - Date(s):: Norwood 1 - May '85 Norwood 2 - Oct. '86

Comments:
Hello everyone. I'm a 15 year old who was born with HLHS. I love going to all of these websites to encourage parents of young ones with HLHS to be strong. When I was born in '85, this was not very well-known. The doctors gave me 7 days to live and sti l hoping for a miracle, my parents took me home. My aunt went to her home town and gathered up all of the books on HLHS. The first article she read was on Dr. Norwood. Even though the doctors in Dallas told us not to, my parents took me to Philadelphia at about a week old and I had my first operation. I then went back for operation number two in '86. Ever since I've been perfectly normal. I played softball for five years(3-7th grade) and basketball for two. My doctor has now exempt me from all highs hool physical activity. My freshmen year, I was the mascot. I am now a sophomore in High School. I would love to hear back from any of you with any questions! Maribeth <><

Maureen Hickson - 11/14/00 23:59:36
My Email:russmaur
Home State - Country:: Michigan
Child(s) Name - Birthdate: 11/12/00
Heart Defect(s): HLHS
Surgery Name(s) - Date(s):: 11/15/00

Comments:
Just want prayers for my Godson, Ethan Christopher. First child for my brother and his wife and he is beautiful. We all have faith in God that he is watching over Ethan and his family.

Nathan - 11/14/00 17:52:53

Comments:


Charles Hamlin - 11/12/00 20:19:16
My Email:chrlshmln@aol.com
Home State - Country:: South Carolina

Comments:
I enjoyed looking at your website! Prayers are with you all.

,mrs. cantrell - 11/12/00 07:13:00
My Email:Queen Zabu @aol.com
Home State - Country:: dalas texas
Child(s) Name - Birthdate: Derian ) oct. 1, 1997
Heart Defect(s): Hypoplastic left heart syndrome
Hospital - Surgeon:: Childens medical center of dallas
Surgery Name(s) - Date(s):: doctor Steven Ring

Comments:
Your son is so much like mine . He has had all 3 stages of the norwood proceedure . Derian had so much leakage of the heart when he was born the doctors only gave him 5% survile rate. We spent a month after the first surgery . derian was only 7 days old w en he went for his first operation . now he is 3 years old and doing well . and yes god does hear all of our prayers !One question does he have a learning disability ? and is he hyper ?

Buchmann Cindy - 11/11/00 19:14:55
My Email:df29@gmx.de
Home State - Country:: Germany
Child(s) Name - Birthdate: Christian
Heart Defect(s): Hypoplastic Left Heart
Hospital - Surgeon:: Prof. Kinsley, South Africa, Prof. Zimmer, Germany
Surgery Name(s) - Date(s):: Morningside, Johannisburg, Uniklinik Tübingen, Germany

Comments:
Christian is now 16 months old and has to go for his 3rd operation in about 8 weeks. He is doing quite well under the circumstances, but we have major eating problems. It would be nice to hear from you about your experiences. I was really surprised about the short stays in hospital after the operations, compared to us in South Africa (1st operation) and Germany (second operation), as we had to stay 7 weeks (1st operation) and about 3 weeks (2nd operation). For the 3rd ope- ration we've been told that we will have to stay 6 - 7 weeks. Would really appreciate a reply from you. Bye Cindy

Clara Santa Maria - 11/09/00 20:35:51
My Email:carynms@yahoo.com
Home State - Country:: Arizona
Child(s) Name - Birthdate: unborn
Heart Defect(s): Hypoplastic Left Heart Syndrom

Comments:
My unborn niece (due at the end of December) has been diagnosed with hypoplastic left heart syndrome. I would appreciate any information or comments about the Norwood procedure. Thank you.

kimberly fowler - 11/07/00 14:19:23
My Email:clarissaroo@hotmail.com
Home State - Country:: nj
Child(s) Name - Birthdate: 1/14/01
Heart Defect(s): hypoplastic left ventrical

Comments:
my babys not born yet. we just found out he had this condition.

Brandon Feller - 11/06/00 23:04:36
My Email:fellstein69@aol.com
Home State - Country:: Indiana
Child(s) Name - Birthdate: Austin Wayne Burris-11/1/00
Heart Defect(s): HLHS
Hospital - Surgeon:: Riley Hospital

Comments:
My Godchild was diagnosed with this on Friday Nov. 3, 2000. He is awaiting his first operation on either Wednesday Nov. 8 or Thursday Nov. 9. He is perfectly healthy besides the fact he has HLHS. After reading Joshua's story it it gives me more hope th t Austin will make it through his operations. I will update on Austin's conditions.

Tasha - 11/06/00 21:29:26
Home State - Country:: MT, USA

Comments:


Karen Destun - 11/06/00 21:27:01
My Email:dust12@sympatico.ca
Home State - Country:: Cambrdge, Ont. Canada
Child(s) Name - Birthdate: Zacary Quin - Oct. 30, 2000
Heart Defect(s): HLHS
Hospital - Surgeon:: Hospital for Sick Children Toronto Ont.
Surgery Name(s) - Date(s):: transplant - still waiting

Comments:
Was touched and encouraged by your Joshua's story. Unfortunatly, Zachary's right heart is not in good enough shape for him to be a candidate for the Norwood procedure. He was just placed on the transplant list 3 days ago, and he's just a week old. We pray that a heart will make it's way to him, and that he can live a happy life like Joshua. Sounds like you have a wonderful family, and support network around you. God Bless.

Peg and Steve Hall - 11/04/00 18:20:45
My Email:stepeghall@aol.com
Home State - Country:: MA
Child(s) Name - Birthdate: due in March, 2001
Heart Defect(s): HLHS
Hospital - Surgeon:: Childrens, Boston

Comments:
It was comforting to read your story of Joshua. We have just recently found out the condition of our baby's heart at 21 weeks. Any information we can learn now is helpful. I was drawn to your story especially because I have ties to the Davidson community. I graduated there in 1990 and appreciate and value the community that exists there. My best to your family and Joshua, Peg

Fabienne and Olivier Bibot - 11/03/00 15:55:01
My Email:olivier.bibot@econophone.be
Home State - Country:: Belgium
Child(s) Name - Birthdate: Victoria
Heart Defect(s): HLHS
Hospital - Surgeon:: U.C.L (saint luc)
Surgery Name(s) - Date(s):: Doctor Sluysmans

Comments:
Hello josuha, We just learn after 22 weeks that our child Victoria will born the 09 of march 2001 with a HLHS. Your story is wonderful and give us the strenght to believe in life and a future for our baby, we know that the way to suceed is very difficult, but such story as yours put us in the right way. Excuse me for my english but our mother languages is french. Have a long and very happy life Fabienne and olivier.... and Victoria

Casey Gutierrez - 11/03/00 04:24:10
My Email:caseyfernando@hotmail.com
Home State - Country:: oregon usa
Child(s) Name - Birthdate: steven smith 3/13/94
Heart Defect(s): hlhs
Hospital - Surgeon:: emanual childrens hospital/Dr. david mcirvin
Surgery Name(s) - Date(s):: norwood stage one and two
Picture Link or Favorite Heart Site: www.expage.com/stevensmith

Comments:
My thoughts and prayers go out to you and your family I have expierienced it first hand my son's homepage is www.expage.com/stevensmith Please read it and see how much we have been through the same journey, and my prayers are with your son,God Bless Casey Gutierrez Coosbay, Oregon

Renee and Randy Johns - 11/02/00 08:17:22
My Email:Renee3010@aol.com
Home State - Country:: California
Child(s) Name - Birthdate: Peter Theodore 10-4-00
Heart Defect(s): HLHS
Hospital - Surgeon:: UCD Medical Center
Surgery Name(s) - Date(s):: Dr. Ralph Delius- Norwood 10-16-00

Comments:
Peter was 12 days old when he had his first surgery. He is still in the hospital recovering from surgery. The first night we almost lost him 3 times, but Peter kept fighting and our prayers were answered. Peter still has a long way to go but continues o fight. We thank God, nurses, and doctors who saved his life and care for him everyday.

Tera Wheaton - 11/02/00 01:33:30
My Email:teralynne@yahoo.com
Home State - Country:: Michigan
Heart Defect(s): HLHS
Hospital - Surgeon:: UMMC Dr Ralph Mosca, Dr Ohye

Comments:


Sally Simard - 11/02/00 00:11:09
My Email:simard@hcr.net
Home State - Country:: East Burke,Vt.
Child(s) Name - Birthdate: Grandson.William Joseph Born Jan 22,2000
Heart Defect(s): HLHS
Hospital - Surgeon:: Portland Or.

Comments:
We thank God For Willaim Joseph. He lives in Alaska with my son and his wife. Fist baby and we didn't know about his heart until the day after he was born. God has been good to us and William is doing very well,he is now 10 months and has had his second s rgery (July 3,2000) Want to know why your son had the third surgery so soon. I was told the third surgery won't happen until 4 or 5 years old. God bless all of you. Sally

Jim & Karen Winchell - 10/31/00 17:57:40
My Email:jcwinchell@dmci.net
Home State - Country:: USA
Child(s) Name - Birthdate: Christopher
Heart Defect(s): Hypoplastic Right Heart
Hospital - Surgeon:: U of M, Dr. Ed Bove

Comments:
Dr. Bove is the Best He also helped our son Christopher. Christopher is now a healthy 3 year old boy that has undergone 3 heart surgeries, just like Joshua has.

Mildred Laine - 10/31/00 14:16:26
My Email:mildredl@copper.net
Home State - Country:: Ohio,USA
Child(s) Name - Birthdate: Justin Steven..10/26/2000
Heart Defect(s): hlhs
Hospital - Surgeon:: Cincinnati Children's Hosp.
Surgery Name(s) - Date(s):: Wed.11/1/2000

Comments:
Justin was just born as you can see from the DOB. He is a beautiful healthy 6lb8oz. boy. His chances of full recovery from the first operation is 80%. I was looking for a diagram of the normal heart and the hlhs heart and came upon your website. It is very well done. I am Justin's great grandmother.

claire daltrey - 10/28/00 14:05:51
My Email:proppy_y2k@yahoo.com
Home State - Country:: chester,cheshire,england

Comments:
iam doing reasearch into heart disease for school and your story really touched me,i hope that joshua is continuing to do well

Cathy - 10/26/00 10:00:27
My Email:catpating@aol.com
Home State - Country:: California, USA

Comments:
It's great to hear a success story like yours...I will tell my sister to check out your website. She has a baby due in December who's been diagnosed with HPLH...the newborn is expected to be operated at Children's Hospital in Los Angeles. Any other insi ht you can give me to help her and her husband would be much appreciated. Thank you and God Bless u for creating this website.

Christy Beckner - 10/25/00 23:05:47
My Email:ellesmomm@cs.com
Home State - Country:: California - United States
Child(s) Name - Birthdate: Elle Tudor - 8/7/00
Heart Defect(s): HLHS
Hospital - Surgeon:: Childrens, San Diego - Dr. Bichelle
Surgery Name(s) - Date(s):: Norwood Procedure 8/11/00 - and 11/7/00
Picture Link or Favorite Heart Site: Yahoo - Health

Comments:
Your story of your precious son has given me such inspiration. I have been scared to death the last month, but now feel a little bit of comfort. My daughters surgery is less than two weeks away and I think I'll be able to get by a little bit better this t me. Thank you for sharing your story.

Shawn Hannah - 10/25/00 22:34:02
My Email:hanahs@hotmail.com
Home State - Country:: DE but living in the UK
Child(s) Name - Birthdate: Connor - 26Dec00?
Heart Defect(s): HLHS
Hospital - Surgeon:: Currently Bethesda

Comments:
Connor was first diagnosed with Endocardio but after the Echo cardio gram it was realized that he has HLHS. We've just learned this information today. It's glad to see others have had a success with the operations, as we are looking at that option as we l, after he is born.

Leslie - 10/25/00 17:34:15
Home State - Country:: Iowa
Child(s) Name - Birthdate: Patrick 12/01/91
Heart Defect(s): HLHS

Comments:
I'm so glad there are more options for parents with children born with this defect. Our son's wasn't discovered until he went into heart failure and transplant or doing nothing were our only choices. Transplant was not an attractive option at that time, s we chose to let him go. It was the hardest thing I've ever done. Good luck to all who face this defect!

malissia harder - 10/25/00 14:14:13
Home State - Country:: west virginia
Child(s) Name - Birthdate: alexis 10-10-00
Heart Defect(s): hypoplastic left heart
Hospital - Surgeon:: uva virginia

Comments:
alexis is my niece,she has went through first surgery-but no success she is now number one on the uva and surronding areas heart transplant list. we hope that we will have as much success as you did.

Lisa Spencer - 10/24/00 19:01:40
My URL:http://web2.murraystate.edu/llynn/csc299-01/joshua.htm
My Email:darylandlisa@yahoo.com
Home State - Country:: Benton, KY-USA
Child(s) Name - Birthdate: Joshua-05-26-99
Heart Defect(s): HLHS
Hospital - Surgeon:: Kosair-Dr. Austin
Surgery Name(s) - Date(s):: Norwood-05-28-99, Glenn 10-11-99
Picture Link or Favorite Heart Site: There are too many to just choose one!

Comments:
I just stopped back in to check on updates. I'm so glad Josh continues to do so well!

Ellen Trantham - 10/21/00 03:34:42
My Email:ertrantham@1starnet.com
Home State - Country:: OK - USA
Child(s) Name - Birthdate: Zachrey Maeson Kos
Heart Defect(s): Mulitple
Hospital - Surgeon:: Childrens, OKC - Dr. Christopher KnottCraig

Comments:
We have a very active 3 year old. His defect were not discoved until he was 3 months old. All we could do was to put him in God's hand and watch miracles happen.

Natalie Johnson - 10/19/00 20:51:26
My Email:babyreagen@hotmail.com
Home State - Country:: Iowa
Child(s) Name - Birthdate: Reagen 11-18-99
Heart Defect(s): Hypoplastic left heart
Hospital - Surgeon:: University of Iowa Hospital Dr Caldrone
Surgery Name(s) - Date(s):: Norwood 11-30-99 Bi Directional Gleen 5-11-00

Comments:
You page is wonderful. You soon is a true miracle just like every other baby with HLHS. I'm so glad when I see kids that madke it through all three surgerys with out complications. Reagen Was in the hospital for 3 months with her Norwood and 6 days with h r Gleen so your soon isa fast recoverer. With love Best Wishes

Sheelah Reaves - 10/19/00 20:38:39
My Email:shreaves@bellsouth.net
Home State - Country:: Toledo,Ohio USA
Child(s) Name - Birthdate: Kayla Raven 7-12-1998
Heart Defect(s): HLHS
Hospital - Surgeon:: Mott in U of M ;Dr.Ed Bove
Surgery Name(s) - Date(s):: Norwood 7-21-1998;Hemi-Fontan 1-5-1999;Fontan 2-26-2000

Comments:
I`m glad to hear that your son is doing well.I didn`t know about my daughters heart untill she was 1 day old.I was shocked when I heard about her heart.I didn`t know about this condition untill after she was born.The docters gave me the three choices and or me there was no doubt what I was going to do.The docters also gave me a choice of where I could take her.They highly recomended Dr.Ed Bove at U of M.Not only is he the best but he has the highest success rate.It has been eight months since my daughters last sugury and she is doing very well.She`s still on two meds and the baby asprin but she will be off of the meds in about a month.She has no restrictions,so she can pretty much do whatever she wants.I am very thankfull to Dr.Bove for saving my daughters life.Thanks again for your story.If anyone has any questions you can e-mail me.

Jane Waters - 10/19/00 04:59:31
My Email:Janewatersjane@netscape.net
Home State - Country:: NSW Australia
Child(s) Name - Birthdate: Simon 15/10/96
Heart Defect(s): HPLHS

Comments:
It has been very interesting to read this site and all the experiences of those who have written in. When Simon was born we were advised against surgery and Simon died a peaceful death at home with his family. It is wonderful to read of all the children who are doing so well.

Bill & Julia Price - 10/19/00 02:51:53
My Email:bp@williamprice.com
Home State - Country:: TN-USA
Child(s) Name - Birthdate: Nik - 3-4-2001
Heart Defect(s): HLHS

Comments:
Thank you... we just found out yesterday.

Meliisa - 10/15/00 19:48:08
My Email:ddp316va17@aol.com
Home State - Country:: VA
Child(s) Name - Birthdate: shawn 02-13-01
Heart Defect(s): hypoplastic left heart syndrome

Comments:
hello my name is melissa i am a little over 5 months pregant. my husband and i just found out about our unborn son having a heart problem. it was a real shock to us.

Sherry Meadows - 10/13/00 16:23:19
My Email:Meadows1@prodigy.net
Home State - Country:: Missoure
Child(s) Name - Birthdate: Joshua 5-4-00
Heart Defect(s): Hypoplatic Left Heart Syndrome
Hospital - Surgeon:: St. Louis Children's
Surgery Name(s) - Date(s):: Huddleston 5-11-00

Comments:
Thank you so much for the hope you just gave me after reading your story. Sherry

Beth Escher - 10/12/00 14:47:55
My Email:brandon@kctc.net
Home State - Country:: Iowa
Child(s) Name - Birthdate: Brandon 3/18/87
Heart Defect(s): Hypoplastic left heart
Hospital - Surgeon:: U of Iowa/Berhandt
Surgery Name(s) - Date(s):: Norwood 3/19/87

Comments:
It is always good to hear about other children with this heart problem and see how they are doing. When my son was born they had just started doing the Norwood procedure and Brandon has done well. If you would like to know more you may e-mail me. Good o see this page and God Bless. Beth

christina steves - 10/10/00 14:07:00
Home State - Country:: new york
Heart Defect(s): hplhs

Comments:
My baby was diagnosed with hplhs at 25 weeks gestation, we are struggling right now with descions, your web site has really encouraged us. the only difference is our baby developed fetal hydrops because of hplhs. I'm glad everything worked for you and yo r son. God Bless

Maggie - 10/08/00 05:10:59
My Email:Maggie6055@yahoo.com
Home State - Country:: California - USA
Child(s) Name - Birthdate: Heather - 2/23/87
Heart Defect(s): HLHS
Hospital - Surgeon:: Pioneer
Surgery Name(s) - Date(s):: none

Comments:
I'm so glad to see so many success stories. Unfortunately we were not one. In 1987 the instance rate was 1 in 100 million. I see now that its 1 in 10,000. Our li'l Angel was only given a 30% chance of surviving any surgery and by the time they diagnos d her, she already had brain damage and was no longer a candidate for surgery anyway. Its been 13 years now, its still VERY difficult not having our first born around us. The hardest part is explaining to her two younger siblings (now 11 and 8) why thei older sister was taken away. Our only explanation is "Because God needs babies too!". Parents--please remember what you have, when you get stressed out, or upset with your children, just remember that you still have them! God Bless to you all.

Jamie Poupard - 10/08/00 00:00:10
My Email:Poupard48166@yahoo.com
Home State - Country:: Michigan
Child(s) Name - Birthdate: Alexandria Poupard
Heart Defect(s): hlhs
Hospital - Surgeon:: UofM michigan Dr.Ouya
Surgery Name(s) - Date(s):: Norwood Procedure

Comments:
Thank you so much for this site.My niece just went through the norwood procedure 3 days ago and is doing great.This gives us hope she will do just as well as your son.It is nice hearing from people who have went through the same thing as we are and there hildren are doing so well.

Carmon Hill - 10/07/00 20:52:28
My Email:Carmon_72370@yahoo.com
Home State - Country:: Arkansas
Child(s) Name - Birthdate: Researching for friend
Heart Defect(s): HLHS & Shones Complex
Hospital - Surgeon:: Children's Hospital of Little Rock

Comments:
My best friends baby was born with HLHS and is awaiting surgery. Her surgery is supposed to be performed in Cleveland, Ohio. I am just finding out as much as possible about her condition so I can better understand. She was also diagnosed with Shones Compl x.

- 10/07/00 05:17:59

Comments:


Bridget Rice - 10/06/00 14:25:19
My Email:wildrice319@aol.com
Home State - Country:: Newport News, VA
Child(s) Name - Birthdate: Wyldon-will be born 10-11-00
Heart Defect(s): HLHS
Hospital - Surgeon:: Children's Hospital of Philadelphia
Surgery Name(s) - Date(s):: N/A

Comments:
I was just wondering if anyone out there has any information on this hospital we will be going to? We go in on 10-11-00 for a scheduled c-section in VA & then will be transported to Philadelphia. Thank you.

Tracie Sheffield - 10/06/00 00:39:00
My Email:tracie@ebau.com
Home State - Country:: Wisconsin
Child(s) Name - Birthdate: Joshua 3-02-89
Heart Defect(s): Coarctation of the aorta, AP window
Hospital - Surgeon:: Minneapolis Children's-Dr. Helseth
Surgery Name(s) - Date(s):: 3-17-89,3-25-89

Comments:
I think your website is beautiful, I praise God that your son is happy and healthy. Good luck.

AMANDA WEST - 10/05/00 19:00:32
My Email:MANDYWEST1@AOL.CPM
Home State - Country:: MEMPHIS,TN USA
Child(s) Name - Birthdate: SPENCER AND IAN(HLHS)
Heart Defect(s): IAN HAD HLHS
Hospital - Surgeon:: DR BOVA
Surgery Name(s) - Date(s):: NORWOOD MAY 3, 2000

Comments:
YOUR WEB SITE IS VERY NICE

Jesse Pizolato - 10/03/00 21:52:35
My Email:Pizolato
Home State - Country:: Phila-PA
Child(s) Name - Birthdate: Due Jan 2001
Heart Defect(s): Left Heart Synd.
Hospital - Surgeon:: Norwood
Surgery Name(s) - Date(s):: """

Comments:
We just found out today that one of our twins has this abnormality. The other twin has a separate set of conditions, equally as severe. Thank you for your info.

Peter Tan - 10/03/00 11:01:39
My Email:soochye@yahoo.com
Home State - Country:: Singapore
Child(s) Name - Birthdate: No Name yet; 1st Oct 2000
Heart Defect(s): HLHS?

Comments:
I was really worried. Now, I have something to look forward to. Thank you

Heather Cochran - 10/02/00 17:10:52
My Email:jhac99@yahoo.com
Home State - Country:: Georgia-USA
Child(s) Name - Birthdate: Austin January 13, 1999
Heart Defect(s): HLHS
Hospital - Surgeon:: Egleston- Dr. Kanter
Surgery Name(s) - Date(s):: Norwood- 2 days old, 2nd- June 24, 1999 3rd - scheduled to be Summer 2001

Comments:
If anyone has any helpful hints on how to handle the third operation please email me. Austin is so active, I scared how he is going to deal with the chest tubes and everything else. His last surgery was only at six months and he was wild then. It took eve ything we had to keep him from pulling everything out of him. He's doing great and hopefully his last surgery will be as successful as his first two. He is a wonderful blessing to us all. Thanks!

Gayle Barfield - 10/02/00 01:46:02
My Email:Huntasma@aol.com
Home State - Country:: Greenville, North Carolina
Child(s) Name - Birthdate: Hunter Barfield 10/30/97
Heart Defect(s): HLHS
Hospital - Surgeon:: Children's Hospital of Philadelphia; Dr. Thomas Spray
Surgery Name(s) - Date(s):: Norwood, 4 days old. Hemi-Fontan, March 97, Fontan scheduled for October 4, 2000

Comments:


Tammy Johnson - 09/27/00 15:00:38
My Email:tlj_insc@hotmail.com
Home State - Country:: Illinois - USA
Child(s) Name - Birthdate: 5 Weeks Until Birth
Heart Defect(s): Hypoplastic Left Heart Defect
Hospital - Surgeon:: Indianapolis Hospital - Unknown
Surgery Name(s) - Date(s):: Unknown - Upon Birth

Comments:
My unborn nephew, Alexander Neil Balding was diagnosed with this condition only yesterday (9/26/00). The doctors in Evansville, IN have referred them on to Indianapolis for the birth of the baby and treatment of the condition. They have not painted a ve y promising picture. I guess, I was trying to educate myself on the condition and gain some comfort from my findings. My sister and I are very close and I would like to offer her information on the condition and positive reinforcement. If you have any dvice you can give me, I could really use the help.

Catherine Kane - 09/26/00 03:57:21
My Email:jeff@roadrunner
Home State - Country:: Australia .N.S.W
Child(s) Name - Birthdate: Nicholas

Comments:
My son is having the Fontan procedure in 2001. Hewill be 3 yrs oldwhen they do it. Im very happy that your son is doing so well it gives me great hope.

Pamela Moses - 09/24/00 03:12:27
My Email:bpmoses@aol.com
Home State - Country:: Michigan
Child(s) Name - Birthdate: Michael and Katherine
Heart Defect(s): none

Comments:
We have friends whose child is about to undergo the first procedure on Wednesday. I am a nurse and work in an open heart surgery ICU with adults. I came to the site to read about your story to find hope and positive thoughts to pass on to my friends.

MaiLee - 09/23/00 03:04:56
My Email:mlhyang@yahoo.com
Home State - Country:: Minneapolis, MN
Child(s) Name - Birthdate: Ashley Kayleen Yang- 9/13/00
Heart Defect(s): HLHS
Hospital - Surgeon:: Children's Hospital, Minneapolis
Surgery Name(s) - Date(s):: Dr. Overby

Comments:
My little Ashley was born a healthy little baby girl. Doctor's never suspected she had HLHS until six days after we gave birth to her. The mid-wives at the clinic I went to told me my insurance did not cover an ultra sound. I trustfully beleived them a d did not check my insurance to make sure. After the 6th day of bringing our healthy little girl, Ashley, home I noticed she had not eaten all afternoon from about 12 noon until 9 p.m. When her father came home he noticed she had been breathing heavier than normal. We both agreed that her color ad dramatically changed! We immediately called Ashley's grandparents to come and see her. As soon as they got here, they told us to immediately take her into the emergency room. There the doctor discover what the problem was. I was very angry that we ound out almost too late about her condition that we could have lost her. A few days later, I called our insurance company directly and they told me they did cover two ultra sounds. I haven't confronted the clinic I go to yet but that's another story. Ashley's surgery is scheduled for Monday September 25, 2000. Please keep our Ashley in your thoughts and prayers. We know that the Lord is with her and she will follow through. I'm sharing my story so people out there should be aware too. Please always make sure to get an ultra sound early and make sure the nurses always go through the entire anatomy of the body, especially of the heart.

Linda Saffron - 09/23/00 02:50:54
My Email:Linda50@centurytel.net
Home State - Country:: MI.

Comments:
My grandson will be Born with HLHS he will come into this world on Sept. 25, 2000 Dr. Bove will be doing his surgery we don't have a date yet His name will also be Joshua, we hope for the best we have total confid nce in the staff and Dr. Bove at the University hospital in Ann Arbor. we will update.

Jennifer Roberts - 09/21/00 21:31:31
My Email:jgrdjr@aol.com
Home State - Country:: Georgia USA
Child(s) Name - Birthdate: Jordan Ashleigh 091900
Heart Defect(s): hypoplastic left heart syndrome
Hospital - Surgeon:: Egleston Children's Hospital
Surgery Name(s) - Date(s):: 092500

Comments:
We just found out that our newborn daughter has this condition. After speaking with the surgeon we have more hope that Jordan will be able to have the Norwood procedure. It gives us hope that there are more children out there that have survived and are eading normal lives. We were unsure that she could be a good candidate for it. Pray for her that she does well on Monday. Thank you for your wonderful story.

JODEAN GARCIA-SIPES - 09/19/00 17:55:40
My Email:CGSIPES@AOL.COM
Home State - Country:: SAN ANTONIO, TX
Child(s) Name - Birthdate: COREE GARCIA-SIPES 12/31/91
Heart Defect(s): HLHS
Hospital - Surgeon:: DR. JOHN CALHOON
Surgery Name(s) - Date(s):: 1/7/92 NORWOOD , 5/20/92 BI-DIRECTIONAL GLENN PROCEDURE

Comments:
MY SON WAS BORN 12/31/91 WITH HLHS, AND BY THE TIME HE WAS 3 MONTHS OLD HE HAD HAD A HEART SURGERY AND STOMACH SURGERY, THEN AT 3 MO OLD HE WENT INTO CARDIAC ARREST FOR 45 MINS, SO NOW AT 81/2 YEAR OLD WE DON'T WALK YET. BUT WITH A LITTLE DETERMINATION AN FAITH IN GOD WILL WORK REALLY HARD ON DOING THAT... DOCTORS TOLD US HE WOULD NOT LIVE TIL 5 YO WE WILL BE 9 IN DEC. SO FAITH IN GOD, AND TRUST IN OUR SURGEONS AND LOT OF WORK DAY IN AND DAY OUT WE WILL BEAT THE DIFFICULTIES... GOD BLESS ALL THE PARENTS ND CHILDREN WITH HLHS. WE STAND TOGETHER AND HELP FIND A WAY TO BEAT HLHS... WE ALL WILL BE FINE

Cheree Kardenetz - 09/19/00 02:30:55
My Email:corkwood@swbell.net
Home State - Country:: Texas

Comments:
My daughter is pregnant in Anchorage, AK, and has just had a 20 week unltrasound in which they said they think they have discovered HLHS. She will be flown to Seattle to see a peridatric cardiologist on 9/23...you site has encouraged us..thanks for sharing.. Cheree Kardenetz Lake Jackson, Texas

Cara Seward - 09/14/00 15:44:19
My Email:gracie111@webtv.net
Home State - Country:: Indiana
Child(s) Name - Birthdate: Grace Elizabeth 1/30/97
Heart Defect(s): HLHS
Hospital - Surgeon:: Riley Children's Hospital, Indianapolis, IN Surgeon--Dr. John Brown
Surgery Name(s) - Date(s):: Stage 1 Norwood-2/97; Stage 2 - 9/97; Fontan - 7/99
Picture Link or Favorite Heart Site: Left Heart Matters was always helpful but still find new and better ones!!

Comments:
It is so fantastic to hear of other success stories of our miracle HLHS kids! My daughter, Grace is 3 1/2 and is doing fantastic!! Even though she nevers takes the easy route and kept us on out toes for quite a while, every day is a whole new miracle. our site is fantastic--will visit often. Good Luck and God Bless--

Sandra Semple - 09/14/00 09:25:47
My Email:Sandy_s_2000@yahoo.co.uk
Home State - Country:: Scotland
Child(s) Name - Birthdate: Due Jan 17th 2001
Heart Defect(s): HLHS
Hospital - Surgeon:: Birmingham
Surgery Name(s) - Date(s):: No known as yet

Comments:
We have just discovered that my unborn child has HLHS. As you can imagine we are devastated, reading your story has given us hope and we can only pray that when our child is born he/she will be as lucky as your little boy. We will be sent to Birmingham c ildrens hospital for the birth and the following operations, can anyone who has experience of this hospital please let us know if they recommend it for being successful in treating HLHS?

vickie batton - 09/13/00 01:31:00
My Email:vbatton@habdleman.com
Home State - Country:: indiana
Child(s) Name - Birthdate: olivia 9/10/00 friends baby
Heart Defect(s): hlhs
Hospital - Surgeon:: riley childrens hospital, no surgery yet,

Comments:
beautiful baby

Ros Pudsey - 09/05/00 20:05:25
Home State - Country:: England
Child(s) Name - Birthdate: Hannah 14.1.88
Heart Defect(s): Awaiting transplant
Hospital - Surgeon:: Leeds/Necastle

Comments:


N. Collazo - 09/05/00 04:07:40
My Email:momskull48@aol.com
Home State - Country:: Palm Harbor,Fl.
Child(s) Name - Birthdate: unborn
Heart Defect(s): HLHS
Hospital - Surgeon:: still unknown

Comments:
Thank you for your website. I enjoyed reading it. Our nephew's son will be born with HLHS, in December. They live in New York. Has anyone out there had a child treated for HLHS in a New York Hospital. Can anyone recommend the best hospital and doctor for this proceedure in the New York area. Thanks

monica bronenkant - 09/02/00 18:23:35
My Email:monica3@onemain.com
Home State - Country:: missouri-usa

Comments:
a close friend of mine and i were pregnant at the same time last year due within a week of one another. we both had problems through our pregnancies. unfortunately her daughter was diagnosed with hlhs seven weeks before she delivered. our children are now 8 months old and doing very well. she has had the first 2 surgeries and come through with flying colors. i just wanted to thank you for setting up your web site. i know it helped my friend, her family, and myself feel a little better about the uncertainti s that little girl faced. none of had ever heard of this before. keep up the encouraging work and best wishes to your family. may your son live a long and happy life.

KATRINA PRATER - 09/02/00 08:19:31
My Email:KAT62798@YAHOO.COM
Home State - Country:: TENNESSEE-USA
Child(s) Name - Birthdate: JORDAN JOSEPH PRATER- JUNE 27, 1998
Heart Defect(s): HLHS
Hospital - Surgeon:: VANDERBILT CHILDREN'S HOSPITAL \ DR. DRINKWATER
Surgery Name(s) - Date(s):: NORWOOD 7-13-98 / GLENN 10-30-98 / FONTAN 7-26-00

Comments:
ALL KIDS LIKE THIS ARE MIRACLES. I AM SO GLAD YOUR SON IS DOING SO GOOD. I WOULD LIKE TO HEAR FROM YOU ABOUT YOUR SON TO KEEP MY SPIRITS UP. GOD BLESS YOU ALL!

stacey - 09/01/00 22:34:18
Home State - Country:: kentucky USA
Child(s) Name - Birthdate: joshua spencer
Heart Defect(s): HLHS
Hospital - Surgeon:: Kosair Dr.Austin
Surgery Name(s) - Date(s):: May 28,1999

Comments:
joshua is my best friends little boy he is a pure miracle he is the sweetest thing i have ever seen he is doing very well he has one more surgery to go his Dr. said that he wanted Joshua to be at least 30 pounds. I have no doubt that he will be just fine and knowing how well your Josh is doing really gives a greater hope

Norma Collazo - 09/01/00 18:44:43
My Email:momskull48@aol.com
Home State - Country:: Palm Harbor, Fl. USA
Child(s) Name - Birthdate: unborn
Heart Defect(s): HLHS
Hospital - Surgeon:: Still not known
Surgery Name(s) - Date(s):: approx. Dec,2000

Comments:
Your website is wonderful. It gives us hope. We just learned that my nephews child will be born with HLHS The baby (a boy) will be born around Christmas time. We have spent many hours on the internet trying to learn as much as we can about HLHS. The N rwood proceedure, which is what your child had seems to be our only hope for the baby's survival. We can only pray that all goes well for the baby and for the parents. It is their first child and they are devastated.

- 08/28/00 04:07:24

Comments:


- 08/28/00 03:52:40

Comments:


- 08/26/00 11:41:14

Comments:


Jenny Fisher - 08/26/00 03:26:39
Home State - Country:: QLD Australia
Child(s) Name - Birthdate: Ashley Anne 15/4/98
Heart Defect(s): Hypo right heart
Hospital - Surgeon:: Prince Charles DR pohlner
Surgery Name(s) - Date(s):: Shunt@7days stage2 stage3 date still to be advised

Comments:


Jessica & Doug Cleland - 08/21/00 18:14:30
My Email:nitromag@aol.com
Home State - Country:: Michigan, U.S.
Child(s) Name - Birthdate: not born yet
Heart Defect(s): HLHS
Hospital - Surgeon:: To be Dr. Bove

Comments:


Dana Richter - 08/20/00 23:06:42
My Email:vdrichter@email.msn.com
Home State - Country:: FlowerMound, Texas
Child(s) Name - Birthdate: Banner Logan 7-27-2000
Heart Defect(s): Hypoplastic Left Heart Syndrome
Hospital - Surgeon:: Children's Medical Center of Dallas
Surgery Name(s) - Date(s):: first stage

Comments:
I'm glad to hear that your son is doing well. We were not so lucky. Banner was born 7-27-2000 with undetected hypoplastic left heart syndrome. She had to be rushed to Children's of Dallas before I even had the opportunity to hold her. She passed away 4 hours later after the first surgery. I am sad that it was not detected early in an ultrasound so maybe everyone would have been prepared, but I'm also glad she didn't have to suffer through these operations. Best to Joshua and the rest of the family. If there is anyone who knows statistics on how often this can reoccur in another pregnancy please write to me at the above email address. God Bless.

Julie Pendergast - 08/17/00 13:42:03
My Email:jpenderg@detroit.bozell.fcb.com
Home State - Country:: Michigan
Heart Defect(s): HLHS

Comments:
I am almost 20 weeks pregnant and our baby was diagnosed 5 days ago with HLHS, we have been totally devastated and are trying to gather as much information as possible. Your sucess story has been very encouraging. Thank you

julie feast - 08/17/00 12:13:30
My Email:b_ballbuddies@lycos.com
Home State - Country:: PERTH, AUSTRALIA
Child(s) Name - Birthdate: STILL TO BE BORN
Heart Defect(s): HLHS

Comments:
I HAVE A GIRLFRIEND WHOSE DAUGHTER'S FIRST CHILD HAS JUST BEEN DIAGNOSED WITH HLHS AND WE ARE TRYING TO FIND OUT ANY INFORMATION REGARDING THIS CONDITION AND SURGERY OUTCOMES ETC., COMING FROM WESTERN AUSTRALIA, THERE ARE NO PLACES THAT SEEM TO DO SURGERY HERE AND THEY WERE ADVISED NOT TO PUT THE CHILD THROUGH THIS SURGERY - OBVIOUSLY WE ARE SEEKING ANY HELPFUL INFORMATION WE CAN GET WITH REGARD TO THIS SYNDROME !!!

maria nichelson - 08/16/00 01:21:56
My Email:larrynichelson@aol.com
Home State - Country:: Tennessee
Child(s) Name - Birthdate: Due Date: Dec 7, 2000
Heart Defect(s): hlhs and vsd
Hospital - Surgeon:: ? looking

Comments:
Thank you for your site. My husband and I just found out 4 days ago during an ultrasound that or baby has a vsd and hlhs. I am only 23+ weeks pregnant and am trying to find as much information as I can before he is born in Dec. We go to see a pediatric cardiologist on Thursday Aug 17th to get his opinion.

ruell gomez - 08/15/00 21:24:32
My Email:ruell.gomez@funb.com
Home State - Country:: Canada
Child(s) Name - Birthdate: Evan Alex Michael Gome
Heart Defect(s): Same
Hospital - Surgeon:: MUSC--Charleston, SC
Surgery Name(s) - Date(s):: Dr. Bradley

Comments:
I'm thankful that your son made it through alright. Unfortunately, mine didn't. Of course though, God always knows best. I'm especially happy to hear of his wonderful progress. I've prayed that others would get through it, and indeed yours has. I jus wanted to let you know that I've been there, in the waiting rooms, in the hospital rooms, in the PCICU. Your prayers and your faith is what was challenged, and you passed with flying colors. I will continue to pray for Joshua, and all the other childre , as it says in Mark: Heaven is meant for them. I guess I now know exactly what he is talking about. God has blessed your son with great strength, as I saw the burden that it can have on one's body. Just continue to believe that your son is a gem, and a gift, that God has not only bestowed on you and your family, but on the rest of the world. Please write back and let me know how he's doing. As I said before, I will continue to pray for Joshua, your special GEM!!!! God Bless!!!

jennifer nordby - 08/13/00 09:58:20
My Email:J_E_N_N_O@yahoo.com
Home State - Country:: port orchard, wa
Child(s) Name - Birthdate: ethatn 8-11-98
Heart Defect(s): hypoplastic left heart syndrome
Hospital - Surgeon:: ucsf dr. hanley
Surgery Name(s) - Date(s):: norwood procedure-stage 1 and 2

Comments:
it is so great to know that there are others out there that are going through the same things we are

Keith & Katy Zumsteg - 08/11/00 00:41:30
My Email:redhawkou812@yahoo.com
Home State - Country:: MI
Child(s) Name - Birthdate: Jacqueline Ann
Heart Defect(s): HLHS
Hospital - Surgeon:: U of M
Surgery Name(s) - Date(s):: 08/11/2000

Comments:
Thank you, our Daughter is having this surgewry done tommorow.

D. Beachy - 08/10/00 21:37:05
My Email:dorbe@juno.com
Home State - Country:: PA

Comments:
I am a midwife's assistant, and one of our patients just discovered she is carrying a baby with HLHS. She had previously lost a baby to the same condition. They are currently researching options on what to do. I found the story of your son very interes ing, and inspiring.

Darren Meyers - 08/08/00 16:43:46
My Email:meyersman@aol.com
Home State - Country:: Windsor, Connecticut
Child(s) Name - Birthdate: Benjamin 12/15/96
Heart Defect(s): HLHS
Hospital - Surgeon:: Boston Children's Hospital - Dr. Pedro DelNido
Surgery Name(s) - Date(s):: Stage 3 completed 7/11/00

Comments:
Our Benjamin was diagnosed with HLHS the day after he was born in Hartford, CT. 1st surgery in Boston at 5 days old, 2nd at 6 months, 3rd at 3-1/2 years (1 month ago). He is recovering at home, we are dealing with fluid retention issues around his heart right now. Otherwise we anticipate a full recovery and no more stays in the hospital.

Krista Chiovoloni - 08/07/00 02:18:48
Home State - Country:: New York
Child(s) Name - Birthdate: Nicholas 3/19/00
Heart Defect(s): single ventricle (very similar to HLHS)
Hospital - Surgeon:: Dr. Bove
Surgery Name(s) - Date(s):: Norwood, March 28,2000, @nd surgery pending in late Sept/early Oct

Comments:
While it was a very difficult decision to opt out of having surgery in our hospital with our local heart surgeon, we are confident we made the right choice to go to Michigan. Dr. Bove reviewed our son's echo tape even before our local surgeon. Our surge n was quite frank and very honorable when he advised us "If there is any doubt in your mind about having the surgery here, hit the road and get on your way to Michigan. We cannot provide the level of aftercare that they do in Ann Arbor and anybody who te ls you that we can is lying." To this day, I am grateful for his honesty. Nicholas is now 4 months old and will have his second procedure done in late September or early October.

Krista Chiovoloni - 08/07/00 02:11:29
Home State - Country:: New York
Child(s) Name - Birthdate: Nicholas 3/19/00
Heart Defect(s): single ventricle (very similar to HLHS)
Hospital - Surgeon:: Dr. Bove
Surgery Name(s) - Date(s):: Norwood, March 28,2000, @nd surgery pending in late Sept/earlty Oct

Comments:


Chris & Sandy Bilpo - 08/06/00 01:21:24
My Email:Csbilpo@aol.com
Home State - Country:: Michigan
Child(s) Name - Birthdate: 12/6/00
Heart Defect(s): HLHS
Hospital - Surgeon:: Dr. Ed Bove

Comments:


martin makinen - 08/05/00 22:29:24
My Email:makie1@lineone.net
Home State - Country:: england
Child(s) Name - Birthdate: Jordan 17/07/2000
Heart Defect(s): hypoplastic left heart syndrome
Hospital - Surgeon:: birmingham childrens hospital DR Brawn and DR Baren
Surgery Name(s) - Date(s):: Norwood 21/07/2000

Comments:
When we found out that Jorden had hypoplastic left heart syndrome we thought that he would not make it. The internet needs more sites about this condition and also some fund raising must be done to find out the cause of this heart defect. Can you let me know of some other sites that are covering this subject, and has anyone found out the cause of this condition. Great site by the way

Holly Pennett - 08/05/00 02:33:27
My Email:scooter_75093@yahoo.com
Home State - Country:: Texas

Comments:
Pediatric nurse - just interested in this syndrome

Steve & Pam Hauge - 08/04/00 00:51:20
Home State - Country:: Wisconsin, USA
Child(s) Name - Birthdate: Kelsey Marie 3/16/97- 3/30/97
Heart Defect(s): HLHS
Hospital - Surgeon:: NA
Surgery Name(s) - Date(s):: NA
Picture Link or Favorite Heart Site: NA

Comments:
Kelsey deeply touched our lives. Our beautiful daughter is now in God's hands. She is close to our hearts always. God Bless all of you.

Rod Loudermilk - 08/03/00 14:53:30
My Email:rodloudermilk@hotmail.com
Home State - Country:: Atlanta, Georgia
Child(s) Name - Birthdate: Joshua Loudermilk, due 12/5/00
Heart Defect(s): HLHS
Hospital - Surgeon:: Yet to be determined

Comments:


Charisse Haines - 07/31/00 00:48:14
My Email:thetaj@jujno.com
Home State - Country:: Texas
Child(s) Name - Birthdate: Wes, 4-12-97
Heart Defect(s): single ventricle,transposition of great vessels, mitral valve prolapse
Hospital - Surgeon:: Childrens. Hospital of Austin, Dewan
Surgery Name(s) - Date(s):: bt shunt,4-24-97, bi directional glenn,norwood ,7-97, fontan, 4 26,00

Comments:
The only way we have been able make it through this roller coaster, is that we have had much prayer support and God is faithful to hold us and keep us.

jenny cox - 07/29/00 08:56:20
My Email:b_ballbuddies@mailcity.com
Home State - Country:: Western Australia
Child(s) Name - Birthdate: due 28/11/00
Heart Defect(s): Hypoplastic left heart syndrome
Hospital - Surgeon:: to be determined
Surgery Name(s) - Date(s):: as above
Picture Link or Favorite Heart Site: new at this !!!!

Comments:
Would appreciate any information (positive) that you can help us with - remembering that we are Christians and know God has all things in His hands - as we are only now finding out about this Syndrome with our first grandchild, we would very much apprecia e any information that could help our daughter and husband in the future with what they may have to face with their newborn child!

LAURA - 07/28/00 07:10:18
My Email:BRUNO LCB@AOL.COM
Home State - Country:: CANADA
Child(s) Name - Birthdate: FRANCIS GABRIEL JUNE19,2000
Heart Defect(s): HLHS
Hospital - Surgeon:: N/A
Surgery Name(s) - Date(s):: N/A
Picture Link or Favorite Heart Site: N/A

Comments:
I am happy to hear about you and Joshua's fight. You are an inspiration to all the families hanging out there. Francis was stillborn at 38 weeks gestation last June 19, 2000. Autopsy report is variant hypotropic left heart syndrome. I was betrayed by th person I trusted so much..my doctor. He did not exert an extra effort to read my ultrasound report that I should go for echo test because ultrasound report did not detect four heart valves of my baby. I only found about that report five days after Franci burial, when I met with and ask him if I can see my prenatal records. I wish I am more prepared and he should have monitored my baby well. I am crying myself to sleep. I miss my little baby who died without proper monitoring. Till here.My kisses to littl Joshua.

cathy g - 07/27/00 19:03:41
Home State - Country:: NEW JERSEY
Child(s) Name - Birthdate: LUCIA JUDY G
Heart Defect(s): HYPOPLAST LEFT VEN
Hospital - Surgeon:: DR AMATO @ UNITED CHILDRENS HOSPITAL
Surgery Name(s) - Date(s):: NORWOOD 1988

Comments:
YOUR STORY PUT A SMILE ON MY FACE. TECHONOLOGY HAS COME A LONG WAY. UNFORTUNATLY MY BABY DID NOT SURVIVE THE SURGERY. BUT TO HEAR HOW WELL YOUR CHILD IS DOING IS WONDERFUL. GOOD LUCK AND GOD BLESS YOU AND YOUR FAMILY...

cathy g - 07/27/00 18:57:52
Home State - Country:: NEW JERSEY
Child(s) Name - Birthdate: LUCIA JUDY G
Heart Defect(s): HYPOPLAST LEFT VEN

Comments:


Michelle - 07/27/00 17:59:23
My Email:baby_11_cutie@hotmail.com
Home State - Country:: Michgian
Child(s) Name - Birthdate: unborn, Dec. 13th, 2000
Heart Defect(s): HLHS
Hospital - Surgeon:: n/a
Surgery Name(s) - Date(s):: n/a

Comments:
I am five months preg. and I just found out after three ultrasounds of everything being normal they tell me my baby might have HLHS. I've been on the internet all day trying to read up on this and I came to this webpage and it gave me hope. Thank you.

Michelle Pederson - 07/26/00 18:50:51
My Email:JPIP36@CS.COM
Home State - Country:: Illinois
Child(s) Name - Birthdate: Derek Michael 5/22/00
Heart Defect(s): HLHS
Hospital - Surgeon:: CHofWisconsin-Twedell
Surgery Name(s) - Date(s):: Norwood 5/30/00

Comments:
Thank you for sharing your story. Derek is our firstborn and we were very overwhelmed with his diagnosis on day 2 of life. We were immediately taken to Children's Hospital in Milwaukee, WI. They were extremely wonderful there. Derek did wonderful afte his surgery, but due to having reflux, we had to have another surgery and we did not come home until July 4th--he's our "Firecracker Baby!!!" He's truly enjoying being at home and his family is even happier that he's home. I would love to hear from any ne!

rosiland bridges - 07/24/00 04:01:10
My Email:roziland@hotmail.com
Home State - Country:: tennessee
Child(s) Name - Birthdate: awating birth
Heart Defect(s): hlhs
Hospital - Surgeon:: u of m
Surgery Name(s) - Date(s):: unkwown

Comments:
I just found out that my unborn baby has hlhs. I am 34 weeks and scared. Your story was a pleasure to read. We hope to flying to Michigan or Vanderbelt hospital upon my 37 week. Thanks for sharing your story. Please E-mail with encouragement or updates on the 3-step surgery.

heidi jones - 07/23/00 12:53:54
My Email:heidi.jones@ntlworld.com
Home State - Country:: england
Child(s) Name - Birthdate: october2000
Heart Defect(s): hlhl
Surgery Name(s) - Date(s):: not known yet

Comments:
i just wont to wish you luck for the future. iam 26 weeks and my child has hypolastic.if theres anybody who has had the surgery at guys hospital in london i would love to hear from you.

Karen Castonguay - 07/19/00 17:53:28
My Email:Karen8211@msn.com
Home State - Country:: Michigan - USA
Child(s) Name - Birthdate: Alexander - 8/31/95
Heart Defect(s): HLHS
Hospital - Surgeon:: Univ. of Mich.- Dr. Bove
Surgery Name(s) - Date(s):: Norwood 9/5/95, Hemi-Fontan 3/12/96, Fontan 4/28/97
Picture Link or Favorite Heart Site: Left Heart Matters

Comments:
My son, Alex, is another success story. He was in the hospital with Joshua for the first surgery. We knew of his condition during the routine ultrasound of my pregnancy, so we were able to prepare (as best as possible) for what was in store for our baby My OB/GYN told us about U/M and Dr. Bove and what a good success rate they had. There was never a doubt about doing the 3-stage surgeries as we wanted to give our son the best hope for survival and a fulfilling life. Through many prayers and God-given strength I am happy to say that our "little miracle" is approaching his 5th birthday! Alex is a happy, loving boy who truly enjoys life and has the greatest disposition ever. He is a joy and inspiration to his family and not a day goes by where I give t anks for being blessed with this child. I would love to talk to anyone regarding HLHS as I, like Joshua's dad, can offer words of encouragement and information on this condition. For those parents faced with the difficult decision regarding their child nd HLHS, I offer the following advice: the surgeries are a godsend for these children and their greatest hope of survival. As for Joshua, I am so happy to hear he's doing well and look forward to seeing you at the next Heart-to-Heart picnic. Take care and God Bless.

LISA SERGENT - 07/17/00 23:19:17
My Email:SERGENTBUGGS@AOL.COM
Home State - Country:: ASHLAND, KY.-US
Child(s) Name - Birthdate: JEREMY 8-3-94
Heart Defect(s): HLHS
Hospital - Surgeon:: KOSAIR CHILDREN,S HOSPITAL LOUISVILLE,KY. DR.EARL AUSTIN III
Surgery Name(s) - Date(s):: NORWOOD 8-11-94 BIDIRECTIONAL-GLENN 12-94 FONTAN 7-97

Comments:


KELLY RASMUSSEN - 07/15/00 04:28:17
My Email:JF62939@ALLTEL.NET
Home State - Country:: OMAHA NE
Child(s) Name - Birthdate: KRISTIAN 11-6-99
Heart Defect(s): HYPOPLASTIC LEFT
Hospital - Surgeon:: DR. DUNCAN; CHILDRENS
Surgery Name(s) - Date(s):: NORWOOD 11-17-99; 1ST STAGE; AWAITING THE REST.

Comments:
YOUR PICTURES ARE ADORABLE; THANKS FOR SHARING YOUR STORY!

Lenore Cameron - 07/15/00 03:21:48
My URL:http://hometown.aol.com/lttlhearts/PicturesofHOPEindex.html
My Email:Lttlhearts@aol.com
Home State - Country:: Connecticut
Child(s) Name - Birthdate: Jeffrey 6/6/96
Heart Defect(s): HLHS
Hospital - Surgeon:: Boston/Dr. Jonas
Surgery Name(s) - Date(s):: Norwood 6/96 Glenn 1/97, still waiting on the Fontan
Picture Link or Favorite Heart Site: http://hometown.aol.com/lttlhearts/PicturesofHOPEindex.html

Comments:
Every year at Little Heart's annual picnics, we take a group photo of kids with HLHS and of kids of all CHDs. Click on the above link if you'd like to see HOPE 2000 - 58 kids with HLHS. Enjoy!

Eric and Kim Van Namen - 07/13/00 19:13:40
My Email:evannamen@yahoo.com
Home State - Country:: mexico city, mexico
Child(s) Name - Birthdate: Luke, 7/4/00
Heart Defect(s): hypoplast left heart syndrome
Hospital - Surgeon:: Texas Childrens hospital, Dr. Frazier
Surgery Name(s) - Date(s):: Norwood, 7/13/00
Picture Link or Favorite Heart Site: webmd

Comments:
Russ, My son, Luke, has hypoplast left heart syndrome and we are encouraged by joshua's story. We were living in mexico city but are from Grand Rapids. We did not know that ann arbor was such a good place or we would have flown there instead. I can't write lo g because Luke is in surgery as we speak. I need to get back and hope to hear from you. In Christ, Eric and Kim Van Namen

MISSY AND PETE SHERO - 07/07/00 17:35:45
Home State - Country:: PENNSYLVANIA
Child(s) Name - Birthdate: KAITLYN 2/2/00
Heart Defect(s): HYPOPLASTIC LEFT HEART
Hospital - Surgeon:: HERSHEY MEDICAL CENTER
Surgery Name(s) - Date(s):: FONTAIN 2/4/00

Comments:
KAITLYN SO FAR IS DOING GREAT. HER NEXT OPERATION WILL PROBABLY BE DUE AROUND AUGUST/SEPT. ONLY TROUBLE NOW IS FEEDING PROBLEMS. WE'RE BEING HOPEFUL ALL WILL WORK OUT. SHE'S HAS QUITE A MIND OF HER OWN. ALL HLHS BABIES ARE IN OUR PRAYERS!

Jim VanFossen - 07/06/00 20:12:58
Home State - Country:: Michigan
Child(s) Name - Birthdate: Michael
Heart Defect(s): HLHS
Hospital - Surgeon:: U of M
Surgery Name(s) - Date(s):: awaiting third stage

Comments:


Jennifer Clark - 07/06/00 17:52:29
My Email:jclark@jesup.net
Home State - Country:: Jesup, Ga.
Child(s) Name - Birthdate: Brennan Clark 7/12/99
Heart Defect(s): HLHS
Hospital - Surgeon:: Elgeston-Atlanta V. Tam
Surgery Name(s) - Date(s):: 1st two stages,and a shunt revision

Comments:
Brennan is doing great now! I found out he had HLHS when I was 22 weeks pregnant. He had his Norwood when he was 2 days old. He had a good recovery. He had to have a shunt revision when he was 2 months of age. He had a tough time after this surgery. He d dn't pick back up until he had his glenn when he was 6 months old. Since then he has done a lot of catching up.He is turning 1!

Byrel Melford - 07/05/00 22:41:28
My Email:BYRELMELFORD@msn.com
Home State - Country:: Jamacia N,Y N,Y
Heart Defect(s): Hypoplastic
Hospital - Surgeon:: Jamacia Hosptial
Surgery Name(s) - Date(s):: No Surgery

Comments:


Byrel Melford - 07/05/00 22:33:16
My Email:BYRELMELFORD@msn.com

Comments:


Deana Ochoa - 07/03/00 21:26:42
My Email:wildochoacoyote @ juno.com
Home State - Country:: Pierceton, Indiana
Child(s) Name - Birthdate: Joshua 111/26/98
Heart Defect(s): Hypoplastic Left Heart Syndrome

Comments:
My Joshua died following his first surgery, 12/9/98.

Jennifer Turngren - 07/01/00 19:02:34
My Email:j_turngren@hotmail.com
Home State - Country:: Dyer, Indiana
Child(s) Name - Birthdate: Jared - 1-16-99
Heart Defect(s): HLHS
Hospital - Surgeon:: Children's Memoiral - Chicago Dr. Mavroudis/Backer
Surgery Name(s) - Date(s):: Norwood - 6days, Glenn-4 1/2mo's, Fontan early 2001
Picture Link or Favorite Heart Site: OurHearts

Comments:
Jared was born on 1-16-99 not knowing of his condition. He is now a very active 17 month old that has feeding issues. He just got a button put in his stomach to help gain weight for the Fontan.

Jennifer Kozuch - 06/30/00 20:15:21
My Email:jkozuch@hiwaay.net
Home State - Country:: Alabama
Child(s) Name - Birthdate: Weston-4/25/00
Heart Defect(s): HLHS
Hospital - Surgeon:: Edward Bove-U of Michigan
Surgery Name(s) - Date(s):: Norwood-5/2/00

Comments:


BRANDON & KRISTIN RUITER - 06/30/00 14:34:27
My Email:BJ_RUITER@HOTMAIL.COM
Home State - Country:: MINNESOTA
Child(s) Name - Birthdate: JOSHUA DANIEL RUITER
Heart Defect(s): HYPOPLASTIC LEFT HEART
Hospital - Surgeon:: NONE
Surgery Name(s) - Date(s):: NONE

Comments:
MY WIFE GAVE BIRTH TO OUR TWIN SONS APRIL 30TH. IT WASN'T TILL MAY 2ND THAT WE FOUND OUT JOSHUA HAD HYPOPLASTIC LEFT HEART SYNDROM. HE WAS 11 WEEKS PREMATURE AND THERE WAS NOTHING THEY (DOCTORS)COULD DO FOR HIM. HE DIED JUST TWO DAYS AFTER BIRTH AND JUS HOURS AFTER WE HAD FOUND OUT.I TRY TO RESEARCH MORE ABOUT THIS DEFECT AS TIME ALLOCATES. OUR PRAYERS ARE WITH YOU AND YOUR FAMILY. IT IS NICE TO KNOW THAT THIS PROBLEM CAN BE CORRECTED!!!!! WE ARE FORTUNATE TO STILL HAVE ALEXANDER......BUT IT IS STILL H RD.... SINCERLY YOURS BRANDON RUITER

Amy Walton - 06/30/00 00:48:39

Comments:


Karen Davis - 06/29/00 13:43:32
My Email:davis_103@hotmail.com
Home State - Country:: Overland Park, KS
Child(s) Name - Birthdate: Paige - Sept. 7, 1995
Heart Defect(s): HLHS
Hospital - Surgeon:: Children's OKC - Dr. Elkins, Children's Mercy, KCMO -
Surgery Name(s) - Date(s):: Completed Norwood, 7/97, Pacemaker insertion 3/98

Comments:
My daughter has done extremely well so far. We have been very blessed with her doctors and the care she has received. Paige has always had some blockage that they have tried to clear with an angioplasty three different times, since that has not been successful, we are facing another surgery to clear the blockage. She is a fighter and I know will do well again this time It just seems to get harder every time we have to go through something like this. I hope your son continues to do well.

Bridget & Sam - 06/26/00 22:50:04
My Email:wildrice319@aol.com
Home State - Country:: Virginia
Child(s) Name - Birthdate: due - Oct 17, 2000
Heart Defect(s): Hypoplastic Left Heart

Comments:


Adam and Soma Dixon - 06/22/00 15:11:35
My Email:dixon@iol10.com
Home State - Country:: Georgia,USA
Child(s) Name - Birthdate: Samuel - 5/7/93
Heart Defect(s): HLHS
Hospital - Surgeon:: Dr. Ed Bove
Surgery Name(s) - Date(s):: 1st 5/11/93, Glenn- 10/28/93, Fontan-12/18/94

Comments:
God is mercyful!

sarh carter - 06/21/00 20:01:31
Home State - Country:: canada
Child(s) Name - Birthdate: emma louise-may 18, 2000
Heart Defect(s): hypoplastic heart-emma's heart was backwards, pointing right, and her aorta was in the wrong side. she had no pulminary arteries and no left chambers

Comments:
Emma was a stillborn baby. I found out 17 days before her birth that there was a heart problem and I found out 6 days before her birth what the problem was. My husband and I are awaiting the results of an amnio to see if it was chromosonal or not.

Amber Hillman - 06/21/00 04:26:41
My Email:Hilambr@juno.com
Home State - Country:: Hawthorne, CA
Child(s) Name - Birthdate: Bobby Hillman almost 5
Heart Defect(s): hlhs
Hospital - Surgeon:: ucla Drinkwater & Laks
Surgery Name(s) - Date(s):: norwood 95 glen 97 fontan 2000

Comments:
I am so happy for your little boy. My son had the same luck as yours untill we went in for his fontan. We were in the hospital for 6weeks,and he came out with a pacemaker. But the most important thing is we stil have him. He is a little behind in his deve opment, but he is catching up fast!!! The most important thing is to never loose faith! I believe everything happends for a reason,we may not know but the man upstairs has his plans!!!

Kyle and Dawn Kuehm - 06/19/00 14:53:27
My Email:DMZSK19@hotmail.com
Home State - Country:: Texas, USA
Child(s) Name - Birthdate: Alexander James, Sept. 2000 ?`
Heart Defect(s): HLHS

Comments:
We are pregnant with our second child, a baby boy. After having three ultrasounds, our doctor believes that our child has hyperplastic left heart syndrome. Although the diagnosis will not be 100% until birth, we are undergoing a series of ultrasounds and also an amniocentisis to determine if there are any chromosonal defects. Your story gives us a sense of hope during this time in our lives. Thank you!

nancy - 06/19/00 03:01:12
My Email:nancyleemiller11@aol.com
Home State - Country:: ohio
Child(s) Name - Birthdate: june 8,2000
Heart Defect(s): hypoplastic left heart syndrome
Hospital - Surgeon:: rainbow babies and children in cleveland ohio
Surgery Name(s) - Date(s):: Dr. Smith

Comments:


william baxley - 06/19/00 00:05:02
Home State - Country:: south carolina
Child(s) Name - Birthdate: megan 3/10/98
Heart Defect(s): HLHS
Hospital - Surgeon:: Scott Bradley
Surgery Name(s) - Date(s):: Norwood/Hemi Fontan

Comments:
Megan will be scheduled for a fontan in july 2000 with an expected surgury date of august 2000 She is our first grandchild Please pray for the success of this final operation.

sarah - 06/18/00 22:03:26
Home State - Country:: amarillo tx
Child(s) Name - Birthdate: kaitlyn 4/ 99
Heart Defect(s): hplh
Hospital - Surgeon:: dallas childrens hosp
Surgery Name(s) - Date(s):: 4/99 7/99 8/99 needs 1 more

Comments:
my kaitlyn needs the last surgery. she had some problems so she needed a extra surgery. we dont know any children with this older than 3 years . so its nice to here about a child that has had this for awhile and is doing great. thank you sarah stinebaugh 5700 wabash # 44 amarillo tx 79109

- 06/16/00 06:44:49

Comments:


YOLANDA AND BOBBY - 06/15/00 14:18:47
My Email:YOLYW5@YAHOO.COM
Home State - Country:: CHGO ILL.
Child(s) Name - Birthdate: ANGELITO WALSH
Heart Defect(s): HLHS

Comments:
THANK YOU SO MUCH FOR YOUR WEB SITE. IT IS VERY COMFORTING TO KNOW WE ARE NOT THE ONLY ONES OUT THERE IN SUCH A SITUATION. I'M VERY HAPPY ABOUT THE SUCCESS STORIES I HOPE WITH TIME TECHNOLOGY GIVES US MORE HOPE. WE WILL ALWAYS PRAY FOR A CURE AND PRAY FOR ALL THE BABIES AND FAMILIES THAT GO THROUGH THESE VERY HARD TIMES. OUR BABY ANGELITO IS IN HEAVEN NOW.

carolyn James - 06/15/00 10:07:42
My Email:cj102492@aol.com
Home State - Country:: alabama

Comments:
I'm a nurse working in the newborn nursery, just interested in information about hlhs. Please send me any good links.

Rudy Rodriguez - 06/15/00 00:34:34
My Email:rudyloli@yahoo.com
Home State - Country:: Eagle Pass, TX
Child(s) Name - Birthdate: Eric Rodriguez 04-25-00
Heart Defect(s): hypoplastic left heart
Hospital - Surgeon:: University hospital (san antonio) Cooper Smith
Surgery Name(s) - Date(s):: Norwood, May 16, 00
Picture Link or Favorite Heart Site: --

Comments:
Good site!!!! God Bless...

Connie Hanks - 06/13/00 16:00:52
Home State - Country:: Kansas

Comments:
I am a labor and delivery nurse in a high risk pregnancy hospital. So happy for your child and family.

MAria CAnessa - 06/13/00 02:11:36
My Email:mariacanessa@usa.net
Home State - Country:: Argentina
Child(s) Name - Birthdate: Luis Maria - May 29, 1998
Heart Defect(s): HLHS
Hospital - Surgeon:: Boston Chidrens Hospital - Pedro del Nido
Surgery Name(s) - Date(s):: Norwood, June 1 1998 - Hemi Fontan, October 18, 1998

Comments:
Im the proud mother of a Miracle baby, diagnosed in Argentina when i was 6 month pregnant. I want everybody who read about this miracles, to think about the wonderful doctors that make their job so well that can diagnose this on time. In my country i had no way to help my baby, because he was a severe case. Thanks to this doctor, i had 2 months and a half to get informed and find the way of do something. I know most of parents do not have this opportunity. Thanks for sharing your story.

Joe Ellis - 06/12/00 22:54:49
My Email:dalby@bellatlantic.net
Home State - Country:: New Jersey
Child(s) Name - Birthdate: Andrew, 8/25/95
Heart Defect(s): hlhs
Hospital - Surgeon:: CHOP/ Dr. Jacobs
Picture Link or Favorite Heart Site: http://pages.prodigy.com/JVRQ81A/family3.jpg

Comments:
Thanks for sharing your experience. My grandson was born with same condition and is now almost 5. Seems normal in most respects but has some limitations - particularly stamina. He gets winded but that doesn't slow him down much. I would like to know if there is any kind of census of HLHS survivors and statistical information on how children are doing as they age. Regards, Joe

Jennifer Brock - 06/12/00 20:48:08
My Email:snjbrck@cs.com
Home State - Country:: califorina usa
Child(s) Name - Birthdate: Joshua Michael 5-15-00
Heart Defect(s): hypoplastic
Hospital - Surgeon:: chlidrens SD, Birchell
Surgery Name(s) - Date(s):: norwood, 5-22-00

Comments:
My son diden't make it thru the first procedure because he had been home for too long and his systems were too weak to withstand the first procedure. we need more doctors to know the signs so alot less people will take their chidren home.

Moody Blues - 06/11/00 00:17:37
My Email:moodyblues_55@hotmail.com
Home State - Country:: New York

Comments:
Wishing you all the best, , , ,went to your page for research on this condition, , , ,

DeAnna Ball - 06/10/00 03:38:34
My Email:mrsball@yahoo.com
Home State - Country:: Springfield, Tennessee
Child(s) Name - Birthdate: Joey
Heart Defect(s): HLHS
Hospital - Surgeon:: Vanderbilt

Comments:
My nephew, Joey, is 2 weeks old and had is first surgury two days ago. Thank you for the inspiration and hope that is so important to us at this time.

Emili Jo Rasmussen - 06/09/00 15:43:05
Home State - Country:: victor Idaho USA
Child(s) Name - Birthdate: Joseph William6-4-00
Heart Defect(s): hlhs
Hospital - Surgeon:: primary children
Surgery Name(s) - Date(s):: norwood 6-12-00

Comments:
I pray every day that our Heavenly Father will give Joseph William a heart so he can come home to his sister Andrea Jo and his brother Wyatt Samuel. Your story brings more faith in my life. thank you. Emileigh Jo, Andrea Jo Wyatt Samuel, Joseph William Rasmussen.......

Veronica - 06/09/00 04:03:31
My Email:delgadof@ciudad.com.ar
Home State - Country:: Buenos Aires Argentina
Child(s) Name - Birthdate: Francisco 11/05/96
Heart Defect(s): HLHS
Hospital - Surgeon:: Boston Childrens Hospital- Dr Pedro del nido
Surgery Name(s) - Date(s):: Norwood 11/09/1996-Glenn at 6th month- Fontan almost 3 years

Comments:
Francisco's doing now a realy normal life, going to school like every boy at his age.i'm his mom.

brigitte - 06/09/00 00:42:05
Home State - Country:: mass-worc.
Child(s) Name - Birthdate: christopher
Heart Defect(s): hypoplastic left heart
Hospital - Surgeon:: boston childrens
Surgery Name(s) - Date(s):: norwood1989 fontan1990 stage3 repair 1992

Comments:
My son is 11yrs old and is doing great. He does everything everyone else does including sports. We only found out about his condition when he was 3 days old, his first surgery was when he was 5 days old.

Juha & Renee Lassila - 06/04/00 18:29:35
My Email:jlassila@net-link.net
Home State - Country:: Michigan
Child(s) Name - Birthdate: Baby girl, Sept. 7, 2000
Heart Defect(s): HLHS
Hospital - Surgeon:: U of M planned

Comments:
Glad to hear your son is doing so well.

Shanta Brownridge - 06/04/00 15:39:30
My URL:http://members.home.net/craigbrownridge
My Email:shantabrownridge@hotmail.com
Home State - Country:: Edmonton, Alberta, Canada
Child(s) Name - Birthdate: Emma / May 30th, 2000
Heart Defect(s): hypoplastic left heart syndrome

Comments:
Thank you for your site...my husband and i have just created our own for our little girl. i pray that her outcome will be as successful as your little boy. this is a very scary time for us and it's somewhat reasurring to hear that others have gone through this same thing and that there can be hope and light at the end of the tunnel. We would love to put your site as a link on ours so please let me know. shanta brownridge

Perry's - 06/03/00 19:52:57
My Email:westelnet.net
Home State - Country:: Idaho
Child(s) Name - Birthdate: 5/19/00
Heart Defect(s): left ventrical not large enough
Hospital - Surgeon:: primary childrens in Utah
Surgery Name(s) - Date(s):: norwood

Comments:
we did not know that our son had any problem until after he was born. They thought that he just had a heart mummer. After an echo test they found that his left ventrcal was not to small to give up on, that he could grow it. It's been 16days now with some hope, finding out that he is growing in measurements. With in the next week we are told we will have to make some decitions on the norwood. Now reading your stories makes us have hope that this surgery is a better option.

Dr. Murali - 06/01/00 23:57:24
My Email:nsmurali@hotmail.com
Home State - Country:: SC
Child(s) Name - Birthdate: Athreya
Heart Defect(s): Hypoplastic RIGHT ventricle with double outflow and Coarctation of Aorta
Hospital - Surgeon:: Dr.Scott Bradley, MUSC, SC
Surgery Name(s) - Date(s):: Norwood

Comments:
Our baby was diagnosed with the above heart defect during routine pjhysical exam by his Pediatrician. He was immediately evaluated and operated by the Pediatric Cardio thoracic team at teh Medical University of SC. Dr. Bradley and his team have been a tre endous source of support and help to us. His surgical skills and the team's concerted approach to the management of these very sick children is truly inspiring. Our baby Athreya is due to have a staged Fontan in 6m and 18 m

Mike Allen - 06/01/00 12:19:34
My Email:faithtrn@aol.com
Heart Defect(s): Left Heart Syndrome

Comments:
Our son and his wife are now in the process of having a baby that not only has the left heart syndrome but also has cystic hydroma. The baby is due September 7th. Did your wife have a c=section or did she have the baby normally. Please e-mail our son with your replay. the e-mail address is his. They will be with us this weekend June3-9. So my e-mail address is lallen3000@earthlink.net. thank you Lucretia Allen

robin barlow-esler - 06/01/00 03:18:43
My Email:emmo-o@juno.com
Home State - Country:: il
Child(s) Name - Birthdate: sofie 3-14-00
Heart Defect(s): hlhs
Hospital - Surgeon:: children's memorial
Surgery Name(s) - Date(s):: stage 1 norwood 3-21-00

Comments:
Thanks for the info and sharing your son's story. It gives me hope. Robin

mark shoffner sr - 05/30/00 20:01:01
My Email:lowcountry@netscape.com
Home State - Country:: in usa
Child(s) Name - Birthdate: mark jr 5/27/2000
Heart Defect(s): hlhs
Hospital - Surgeon:: riley
Surgery Name(s) - Date(s):: norwood 5/31/2000
Picture Link or Favorite Heart Site: our hearts

Comments:


Heather Spears - 05/29/00 12:35:43
My Email:heatherspears@yahoo.com
Home State - Country:: MD
Child(s) Name - Birthdate: Quenton
Heart Defect(s): HLHS
Surgery Name(s) - Date(s):: Norwood

Comments:
I am 29 weeks pregnant with Quenton and he is due to be born on August 16. I really appreciate the information you are sharing. It is a great comfort to us to be able to learn more about the journey we are about to take. We have only known about his co dition for less than a week and still are quite shaken. He is our fifth child, and all our children have been healthy so far. I just wanted to thank you for your efforts to educate others as it is obviously a scarey illness. Sincerely, Heather P. Spears

LISA CATON - 05/27/00 13:03:57
My Email:TOYTRAIN1999@NETZERO.NET
Home State - Country:: FALL RIVER , MASSACHUSETTES
Child(s) Name - Birthdate: CASSIE NOT BORN YET 8 WEEKS TO GO
Heart Defect(s): VENTRICULAR SEPTAL DEFECT, VENTRICLAR HYPOPLASIA, MITRAL ATRESIA
Hospital - Surgeon:: WOMEN & INFANTS TO DELIVER
Surgery Name(s) - Date(s):: DON'T KNOW YET

Comments:
MY LITTLE GIRL ALSO HAS DANDY WALKER VARIANT AND AN ABSENT RT KIDNEY. MY HUSBAND AND I ARE SCARED AND HAD AN AMNIO DONE TO SEE IF ALL THE PROBLEMS ARE RELATED. HOW DO YOU CHOOSE WHAT IS BEST FOR YOUR CHILD. CAUSE WITH EVERYTHING I'M READING AT THIS POINT HEY ARE NOT MAKING IT SOUND VERY GOOD.

Janice Finkele - 05/27/00 12:32:26
My Email:IE95PSU@aol.com
Home State - Country:: Michigan-US
Child(s) Name - Birthdate: Ty - 3/3/00
Heart Defect(s): Hypoplastic Left
Hospital - Surgeon:: Childrens (Detroit)- Dr. M.Hakimi
Surgery Name(s) - Date(s):: Norwood - 3/27/00

Comments:


Angela Nelson - 05/26/00 03:06:29
My Email:way@kih.net
Home State - Country:: Leitchfield, KY
Child(s) Name - Birthdate: boy-due July 16,2000
Heart Defect(s): hlhs, coarc. of aorta
Hospital - Surgeon:: Kosair, Dr. Austin
Picture Link or Favorite Heart Site: Left Heart Matters

Comments:
Thank you for sharing Joshua's story. We found out ten weeks ago that our baby has hlhs, and just last week that he also has coarctation of the aorta, which is not unusual with hlhs babies. It has been a long ten weeks and we still have seven to go. Th closer it gets the more scared I get. That's why we are so thankful to you and others for sharing your stories. It gives us so much hope for the future of our child. He has an older brother, Randy, who is 4 years old, and anxiously awaiting the birth f his baby brother. It is going to be so hard for him. We will let you know how he does. If anyone would like to talk or share experiences, feel free to email me. I HOPE AND PRAY THAT JOSHUA CONTINUES TO DO WELL, GOD BLESS YOU AND YOUR FAMILY!!

Donna White - 05/24/00 06:55:13
My Email:braithanvail@bigpond.com
Home State - Country:: australia
Child(s) Name - Birthdate: Ethan Born 24/08/98 Died 20/09/98
Heart Defect(s): Coarctation of the aorta, Common Atrium, VSD, Septum & Desticardia
Hospital - Surgeon:: Royal Melbourne Children's Hospital
Surgery Name(s) - Date(s):: Dr Tom Karl

Comments:
Thank you for letting me read Joshua's story. It is wonderful to know that some babies born with CDH do survive !! I hope and pray that Joshua will stay a "normal" and healthy boy. Kindest thoughts Donna

linnet - 05/23/00 04:08:33
Home State - Country:: Australia

Comments:


JEMIMA - 05/21/00 17:39:00
My Email:brownn23@yahoo.com
Home State - Country:: FLORIDA, U.S.A.
Child(s) Name - Birthdate: JASMINE J-CHARLES 01-12-00
Heart Defect(s): HLHS
Hospital - Surgeon:: MIAMI CHILDREN'S HOSPITAL - DR EVAN BURKE, DR ZAHN, AND DR HANNAN
Surgery Name(s) - Date(s):: NORWOOD PROCEDURE 01-20-00
Picture Link or Favorite Heart Site: NONE

Comments:
AS I'M TYPING TO YOU RIGHT NOW, I FEEL SO OVERJOYED TO HAVE HEARD THIS WONDERFUL STORY. MY DAUGHTER JASMINE WAS ALSO BORN W/ HLHS. SHE'S IN HER 1ST STAGE SURGERY AND SHE'S DOING SO WONDERFUL. SHE SPENT 4 MONTHS IN THE HOSPITAL. I'M THANKFUL TO THE LORD T AT WE FINALLY CAME HOME WITH HER ON MAY 11TH OF 2000. SHE'S DOING GREAT, SHE'S CURRENTLY ON SOME HEART MEDICATIONS THAT YOU MIGHT BE FAMILIAR W/: DIGOXIN, LASIX, ASPIRIN, AND CAPOTEN. I'M VERY HAPPY TO HAVE READ THIS WONDERFUL AND UPLIFTING STORY. AND MAY THE LORD CONTINUES TO BLESS LITTLE JOSHUA THROUGHOUT HIS LIFE

Cindy Struckman - 05/19/00 07:10:33
My Email:c_struckman@hotmail.com
Home State - Country:: Ord, Nebraska
Child(s) Name - Birthdate: Kailey Ann 9-29-99
Heart Defect(s): HLHS
Hospital - Surgeon:: Childrens at Omaha- Dr. Kim Duncan
Surgery Name(s) - Date(s):: 1st Norwood 10-7-99

Comments:
After reading your guestbook I wanted to say "thank you", I have been looking for others with HLHS babies but am not good on the computer so hadn't found much yet. I would love to communicate with anyone about their experiences, and also what they have he rd on the chances of having another baby with HLHS. Thanks again and good luck to Joshua. Cindy

Cindy Struckman - 05/19/00 05:11:55
My Email:c_struckman@hotmail.com
Home State - Country:: Ord, Nebraska
Child(s) Name - Birthdate: Kailey Ann 9/29/99
Heart Defect(s): Hypoplastic Left Heart Syndrome
Hospital - Surgeon:: Childrens Hospital at Omaha, Ne- Dr. Kim Duncan
Surgery Name(s) - Date(s):: 1st Norwood 10/7/99

Comments:
We lost our precious Kailey Ann on Christmas Day when she was almost 3 months old. I am interested in communicating with other parents of HLHS babies. We would like to have another baby but are a little nervous. Thanks for sharing your sweet Joshua with u . Cindy

Amy Hower - 05/18/00 21:26:35
My Email:amyhower@juno.com
Home State - Country:: Michigan
Child(s) Name - Birthdate: Joshua 12/23/92
Heart Defect(s): HLHS
Hospital - Surgeon:: Womens and Childrens Hospital Universety of Texas John Calhoon
Surgery Name(s) - Date(s):: Jan 1993, July 1993 & Oct. 1994

Comments:
Joshua is now a very active 7 year old. He is in kindergarten. He is on children's Asprin and Captipril. We did not find out about his HLHS until he was two weeks old. He was born in a small Army Hospital in Louisiana. He was 6 lbs 13 oz at birth. We were told the same thing. Heart transplant, Norwood procedure or do noting. We chose the Norwood. He has a healthy 3 year old sister Rececca Born 3/13/97.

Amy Hower - 05/18/00 21:24:47
My Email:amyhower@juno.com
Home State - Country:: Michigan
Child(s) Name - Birthdate: Joshua 12/23/92
Heart Defect(s): HLHS
Hospital - Surgeon:: Womens and Childrens Hospital Universety of Texas John Calhoon
Surgery Name(s) - Date(s):: Jan 1993, July 1993 & Oct. 1994

Comments:
Joshua is now a very active 7 year old. He is in kindergarten. He is on children's Asprin and Captipril. We did not find out about his HLHS until he was two weeks old. He was born in a small Army Hospital in Louisiana. He was 6 lbs 13 oz at birth. We were told the same thing. Heart transplant, Norwood procedure or do noting. We chose the Norwood. He has a healthy 3 year old sister Rececca Born 3/13/97.

John Teal - 05/18/00 04:12:47
My Email:jt253@juno.com
Home State - Country:: MS - USA
Child(s) Name - Birthdate: Mac - due 08/21/00
Heart Defect(s): HLHS

Comments:
Thanks for your article. It's an inspiration. My wife and I are currently trying to decide between the Norwood and a transplant. We are leaning toward the Norwood and trying to decide where to go. I appreciate your info about Michigan very much. We a e trying to decided between Michigan, Cleveland (the Cleveland Clinic) and San Francisco. These seem to be the best in the country from what our pediatric cardiologist told us but we've only begun thinking about this. Thanks again for your article. God bless. John

Loriann Keeping - 05/18/00 02:44:25
Home State - Country:: Burlington, Canada
Child(s) Name - Birthdate: Preston(Nov.30,1999)
Heart Defect(s): Hypo Plastic Left Heart
Hospital - Surgeon:: Sick Kids Hospital (Toronto, Canada)
Surgery Name(s) - Date(s):: Dr.Vanarsdale
Picture Link or Favorite Heart Site: Left Heart matters

Comments:
I am so surprised to see that so many newborns have been born with this disease. I am only 22 and when my son was born with HLHS it almost torn my life apart. I didn't know what to do, but with alot of support we decided to do what most people did, we wen with the 3 stage procedure. My son under went his first surgery on December 6, 1999 at 6 days old. The surgery went great. We finally got to bring him home on December 27. But on January 1 at 8:30 pm our lives changed forever. My son(my little angel) pas ed away. We were told that the shunt in which was installed in my sons heart suddenly got block causing not enough oxygen and blood to get to his heart. There's not a day that goes by that I don't think about what it could of been like or what if we chose a different approach, but it's stories like Josh's that keeps me going. So from my family to your's God Bless and take care of that little angel.

Loriann Keeping - 05/18/00 02:33:42
Home State - Country:: Burlington, Canada
Child(s) Name - Birthdate: Preston(Nov.30,1999)
Heart Defect(s): Hypo Plastic Left Heart

Comments:


Vicki King - 05/17/00 15:41:42
My Email:vking@shol.com
Home State - Country:: Pennsylvania. USA
Child(s) Name - Birthdate: Kayla 5/17/92
Heart Defect(s): HLHS
Hospital - Surgeon:: Children's of Pittsburgh
Surgery Name(s) - Date(s):: the 3 stages

Comments:
When my daughter was born 8 years ago and we were told she had hlhs, I never heard of it. I am so amazed at the number of babies with this heart condition. I know it helped me when I found someone with a child older than my daughter, if anyone has any que tions, feel free to e-mail anytime. Kayla just turned 8 years old today, and although she is smaller than the kids her age she is such a bright little girl. I pray for Joshua and all the children with this heart conditon.

Shelia Clopp - 05/15/00 19:25:59
My Email:sheliaclopp@hotmail.com
Home State - Country:: Alabama

Comments:
One of my closest friends has a baby, Weston, with HLHS. He was born 4/25/2000 and had the Norwood procedure 5/2/2000 at the same hospital as your child. He is doing well and hopefully coming home tomorrow. I have been helping my friend by researching s much as I can. Thanks for a good, happy, story!

Melissa Mespelt - 05/15/00 18:37:13
My Email:Tommy_g_17@hotmail.com
Home State - Country:: Idaho, U.S.A.
Child(s) Name - Birthdate: I am the child :-) 03/15/85
Heart Defect(s): none, but I do have severe medical conditions
Hospital - Surgeon:: Seattle Childrens Orthopediac hospital
Surgery Name(s) - Date(s):: Dr. Inglis and Dr. Beck

Comments:
I came across this page by accident trying to find another Joshua's Story on a little boy with a tracheostomy because I need to give his mom some major advice (I am going through the same thing). So first if any one knows that sight please tell me, and s cond this is a good sight for Joshua. You guys did the right thing and I wish you luck. I will sign this again when I am in the hospital this June. Never lose hope, I know I did and I got worse. So keep smiling!!!! Love always, Melissa

- 05/15/00 16:40:57

Comments:


le counte - 05/15/00 16:39:13
Home State - Country:: georgia
Child(s) Name - Birthdate: EFREM LeCounte
Heart Defect(s): HLHS
Hospital - Surgeon:: MED COLLEGE OF GA.
Surgery Name(s) - Date(s):: Norwood stage I & II

Comments:


Anneke Gyles - 05/08/00 19:33:20
My Email:annekegyles@hotmail.com
Home State - Country:: Rugby, England, UK

Comments:
I'm a PICU nurse looking at the ethics behind performing such complicated and risky heart surgery on babies with HLHS. I.m so happy to see that your son and so many other have coped with such difficult treatment.

Aida and Paul Bamutya - 04/30/00 20:44:04
My Email:bamutya@tcinternet.net
Home State - Country:: Minnesota- USA
Child(s) Name - Birthdate: Elijah B. Mugudde 04/24/00
Heart Defect(s): HLHS
Hospital - Surgeon:: University of Minnesota- Dr.Cynthia S. Herrington
Surgery Name(s) - Date(s):: Norwood Procedure- 04-28-00
Picture Link or Favorite Heart Site: Heart Matters.

Comments:
This is the tenth time we're visiting this site. We missed out some important information when we entered our son's data. Our son Elijah B. Mugudde was diagnised with HLHS at 38 weeks and he was born at 41 weeks. He weighed 8.6 pounds at birth. He just underwent the Norwood procedure on 04-28-00 at the U of M. He is now recovering in good and stable condition. His attend ng physcian is Dr. Lorh Jamie and his surgeon is Dr. Cynthia Herrington. These two with the other medical staff at the University hospital have been so wonderful. Dr. Herrington has camped at our son's hospital bed to monitor his development after the sur ery. This is a Godsent nice and hamble lady. We're equally thankful to Joshua and parents for opening up this resource center where parents with babies affected with HLHS can come together and share information about their experiences and also expose the Doctors out there there who can jumpstart our babies lives. May the Almighty Lord bless all those that visit this site and may all our babies grow old enough to play baseball and praise the Living God as they build for the future.

Ameena - 04/30/00 00:56:34
My Email:Ameena.Bazz.Juno
Home State - Country:: BRONX,NEWYORK
Child(s) Name - Birthdate: OMAR 04-14-00
Heart Defect(s): HLHS
Hospital - Surgeon:: The Presbyterian Hospital NY
Surgery Name(s) - Date(s):: Norwood

Comments:


- 04/30/00 00:23:44

Comments:


Laurie - 04/28/00 03:31:49
My Email:hvnle@yahoo.com
Home State - Country:: OK

Comments:
My cousin's wife is pregnant with a son. He has been diagnosed (thru ultrasound) with HLHS. Thru many prayers and tears, they have decided not to terminate the pregnancy. Your page is inspirational....I am going to tell them about it. Thank you for yo r words of encouragement...Laurie

Paul & Aida Bamutya - 04/27/00 03:15:59
My Email:bamutya@tcinternet.net
Home State - Country:: Minnesota
Child(s) Name - Birthdate: Elijah B. Mugudde
Heart Defect(s): HPLHS
Hospital - Surgeon:: U of Minnesota Hospital
Surgery Name(s) - Date(s):: 04-28-2000
Picture Link or Favorite Heart Site: LEFT HEART MATTERS

Comments:
Our son Elijah Mugudde was diagonised with the Hypoplastic Left Heart Syndrome at 38 weeks and wasn't born until 41 weeks. His first operation will be on Friaday 04-28-2000. He weighed 8.6 pounds at birth. Joshua's story and other babies with this defec have restored some hope in us. Joshua we will keep you in our prayers and if you can, read Psalms 23. We will keep you posted after Elijah's Norwood procedure. May God bless all of that visit this site.

lasundra williams - 04/26/00 18:27:12
My Email:lawilli@memphis.edu
Home State - Country:: Tennessee
Child(s) Name - Birthdate: September 4, 2000
Heart Defect(s): HLHS
Hospital - Surgeon:: Not sure yet

Comments:
I'm just on the computer searching for info on this disorder. My baby was diagnosed with this disorder at the beginning of my fifth month of pregnancy. I am only 19 years old. My doctor also recommends that I go to Ann Arbor. Your story is very encoura ing. With the newfound hope you've given me and my belief in God, I feel that ours will also be a story of success. We're praying for a miracle!! GOD BLESS YOU ALL!!

Kimberly Bennethum - 04/25/00 21:45:33
My Email:kimmerkay80@netscape.net
Home State - Country:: PA

Comments:
I am doing a report on this heart disorder for my college anatomy class, that's why I am on this site.

Kerri Miller - 04/24/00 23:34:42
My Email:Browneyedgal18_00@yahoo.com
Home State - Country:: Virginia
Child(s) Name - Birthdate: none
Heart Defect(s): none
Hospital - Surgeon:: none
Surgery Name(s) - Date(s):: none
Picture Link or Favorite Heart Site: none

Comments:
I was looking for websites on heart disease and I just happened to come across your story. Please charish your child my sister had heart disease and she has passed on and I don't think she ever knew how muched I loved her. I'll be praying for Josh. I ho e that he grows up to become a very happy and very loving man.

Cathy Musselman - 04/24/00 20:12:28
My Email:camussel@iname.com
Home State - Country:: Michigan
Child(s) Name - Birthdate: 1/4/92
Heart Defect(s): HLHS
Hospital - Surgeon:: U of M - Dr. Bove
Surgery Name(s) - Date(s):: All Three Stages

Comments:
My son Eric is now 8 years old and doing great. He plays soccer and Little League Baseball. This fall he hopes to play basketball. He takes coumadin everyday for a stent they had to put in during his third surgery, but that is the only medicine he takes. would recommend the 3-stage surgery over a transplant for the very same reasons you listed.

julia willis - 04/23/00 23:14:00
My Email:slappy pappy32@aol.com
Home State - Country:: INDIANA USA
Child(s) Name - Birthdate: BROOKLYN MIDDLE OF AUGUST2000
Heart Defect(s): HLHS
Hospital - Surgeon:: RILEY HOSPITAL FOR KIDS SURGEN?

Comments:
IAM THE GRANDMOTHER OF BROOKLYN SHE WILL BE BORN IN AUG.2000 I HAVE BEEN LOOKING FOR INFORMATION ON HLHS AND IT IS ALLMOST IMPOSSIBLE MY DAUGHTER IS22 AND HAS A HEALTHY 2YR. OLD GIRL NAMED HAYLEE REBEKAH IS VERY UP SET I KNOW YOUR STORY WILL HELP HER IT I COURAGED ME THANKS JULIA

Dominique and Arno Klop - 04/23/00 09:31:43
My Email:arno.dominique@worldonline.nl
Home State - Country:: Almere / Netherlands
Child(s) Name - Birthdate: Ralph Aengus 30 Januari 2000
Heart Defect(s): HLHS
Hospital - Surgeon:: Leiden / LUMC
Surgery Name(s) - Date(s):: Norwood 09 Februari 2000

Comments:
Hi, Our son is doing well after his first surgery. He is drinking his bottles on his own! His next surgery shall be between now and June 2000. He's a very happy boy (blue eyes and a lot of blond hair)with also the same problems as other babies. Please don t hesitate to send a E-mail with questions or what ever you feel like to tell. Thank You en good luck for everyone! Dominique and Arno

James Miles - 04/19/00 22:09:37
My Email:jnmiles_2000@yahoo.com
Home State - Country:: Michigan
Child(s) Name - Birthdate: Kevin - 12-06-96
Heart Defect(s): HLHS
Hospital - Surgeon:: U of M Dr. Bove
Surgery Name(s) - Date(s):: Norwood Proccedure. Final surgery Septmber of 1998

Comments:
We, my wife and I, feel as you do. Dr. Bove is a Godsend. We were fortunate to live just 45 minutes from the U of M, but we didn't find out about his heart until after he was born. We've made regular trips to Ann Arbor, sometimes just to say hello. On of the assisting surgeons from there, Dr. Ian Law, has come to our home for dinner. He has since left the U of M and moved back home to take up residency at his local Iowa hospital.

Brandon - 04/17/00 12:31:10
My Email:janmeyer@main-net.com
Home State - Country:: Ohio
Child(s) Name - Birthdate: Brandon 1-31-91
Heart Defect(s): AVSD
Hospital - Surgeon:: Dr. Davis, Columbus Children's Hospital
Surgery Name(s) - Date(s):: 8/91 1st repair @ Sick cildren's Hospital, Toronto. 8/92, Aneurysm repair @ Columbus Children's, 5/99 Valve work in Columbus

Comments:
Hi Joshua and Joshua's dad, This is Brandon and his mom. How are you doing now? I am doing great. Its nice to talk to someone else who has had heart surgery too. I don't know anyone esle who has had heart surgery. We will pray for you please pray for us too. Br

Mike and Beth Allen - 04/17/00 02:35:07
My Email:faithtrn@aol.com
Home State - Country:: utah usa
Child(s) Name - Birthdate: not born yet
Heart Defect(s): diagnosis

Comments:


MELINA ROBERTS - 04/16/00 22:13:49
My Email:sgibson@lasercut-engineering.com
Home State - Country:: IRELAND
Child(s) Name - Birthdate: AARON ROBERTS
Heart Defect(s): HLHS
Hospital - Surgeon:: MARC DE LEVAL GREAT ORMOND STREET HOSP.
Surgery Name(s) - Date(s):: GLENN. (1994) HEMI-FONTAN. (1995) FENESTRATED FONTAN.(OCTOBER 1997)

Comments:
Aaron was a very happy and normal child up until his untimely death in march 99,His surgery had gone accordingly but unfortunately he ran into difficulty with the third stage.The staff in the Hospital were amazing to the point were they were like family.A ron taught many people so much in his short life,mainly LOVE. Aaron was born in september 1994 and with much panic we managed to get him to the UK to undergo the lifesaving surgery he so urgently needed as it was not available in Ireland at that time.I so etimes feel like I have so much to cry about but know I have more to be happy with,I have the memory of Aaron and his four wonderful years and I know he enjoyed his life to the full. It is the hardest decision you will ever have to make for your child but without the surgery there is no hope,If there is a chance for life it must be taken!!!! NEVER GIVE UP HOPE!!!! I think this site is an excellent way for parents to check up on the fantastic success that is being had now with the Norwood procedure and to also know that they with their children are not alone. Best of luck for the future to Joshua Lots of Love Melina Roberts,Ireland.

jovette landry - 04/16/00 03:12:05

Comments:


kim goeins - 04/14/00 19:58:14
Home State - Country:: melrosr park PA
Child(s) Name - Birthdate: Graejarie Aug. 10, 1995
Heart Defect(s): Hypoplastic left heart
Hospital - Surgeon:: St. Chris Phila Dr. Jacobs
Surgery Name(s) - Date(s):: hemi, fontan

Comments:
my daughter has the same condition- hypoplastic left heart. she had her first surgery at 4 days old atonly 5lbs. 3 oz. she came home in 33 days. second surgery 10 months old at only about 10 lbs and she was in the hospital for about 3 months. She still has the last stage of surgery to go through and the suregon thinks that now she is ready. with her size being so small we had to wait for her to g t some meat on her bones and she is finally growing nicely, she is still small but we cant wait for ever. I only have acess to a computer at work so I have no E-mail adress. you could contact me by phone at (215)635-3380 after6pm or write me at 1308 willow ave B215 Melrose Park, Pennsylvania, 19027 Iwould love to hear from you or receive any information regarding this subject Thank you, Kimberly Goeins and my little miracle Graejarie!

Robin Cornish - 04/14/00 14:03:59
My Email:RBC0917@aol.com
Home State - Country:: Texas
Child(s) Name - Birthdate: Blake-due 8/28/00
Heart Defect(s): HLHS

Comments:
I just found out that my baby has HLHS. As you know this is devastating news to find out. We are in the process of researching and getting information to make the most correct decision. You 're story has been very encouraging and informative. Thank you, Robin

GRANDMA - 04/14/00 02:47:41
My Email:dogeocsy@home.com
Home State - Country:: galesburg ill
Child(s) Name - Birthdate: sept 2000 ???
Heart Defect(s): hypo plastic

Comments:
I had tears of joy to see a little boy had servied this defect,I just found out my grandaughhter has HYPO PLASTIC, HYDROPS, TURNER SYNDROM,one of the worst, that we have had to go thru,ONLY MY FAITH IN GOD WILL SEE US THRU THIS, GOD BLESS YOU AND YOUR FAM LY

Lynn Watson - 04/12/00 22:36:12
My Email:clwatson@supernet.com
Home State - Country:: Pennsylvania
Child(s) Name - Birthdate: Colton Riley 10/2/97
Heart Defect(s): HPLH
Hospital - Surgeon:: Hershey Medical Center - Dr. John Meyers
Surgery Name(s) - Date(s):: Norwood, & Bi-directional Glen
Picture Link or Favorite Heart Site: Left Heart Matters

Comments:
From the time Colton was born I felt something just wasn't right. He appeared more blue than a normal baby. The doctors informed me during my pregnancy everything looked fine, and I din't require an ultrasound. Then 13 days after he was born I noticed he asn't eating like he had been, and he started laboring to breathe. He was rushed to a local hospital from his peditricans office, then flown via Life Lion to Hershey Med Center. There he was diagnosed with HypoPlastic Left Heart Syndrome. We were then giv n our chioces of a heart transplant, 3 stage surgery, or to take him home and let him pass on. We chose the surgeries. Since, when he arrived at the hospital his PDA had aready begun to close, the doctors were not sure if he had suffered any brain damage. After 3 days in the PICU, Colton was flown via jet to the Childrens Hospital of Pittsburg. After his first surgery, he spent a month total in the hospital. Then his surgeon transferred to Hershey Med Center. Dr. Myers then performed the second stage of th surgery 6 months later in April of 1998. Colton is one of the happiest kids we know, and is due for the third stage of the surgery in the next month or so. I really injoyed you web site, it did help me with some concerns of mine. I am also very happy you son is doing so well. That certainly gives me a feeling of releif with Colton's next surgery.

Lynn Watson - 04/12/00 22:36:11
My Email:clwatson@supernet.com
Home State - Country:: Pennsylvania
Child(s) Name - Birthdate: Colton Riley 10/2/97
Heart Defect(s): HPLH
Hospital - Surgeon:: Hershey Medical Center - Dr. John Meyers
Surgery Name(s) - Date(s):: Norwood, & Bi-directional Glen
Picture Link or Favorite Heart Site: Left Heart Matters

Comments:
From the time Colton was born I felt something just wasn't right. He appeared more blue than a normal baby. The doctors informed me during my pregnancy everything looked fine, and I din't require an ultrasound. Then 13 days after he was born I noticed he asn't eating like he had been, and he started laboring to breathe. He was rushed to a local hospital from his peditricans office, then flown via Life Lion to Hershey Med Center. There he was diagnosed with HypoPlastic Left Heart Syndrome. We were then giv n our chioces of a heart transplant, 3 stage surgery, or to take him home and let him pass on. We chose the surgeries. Since, when he arrived at the hospital his PDA had aready begun to close, the doctors were not sure if he had suffered any brain damage. After 3 days in the PICU, Colton was flown via jet to the Childrens Hospital of Pittsburg. After his first surgery, he spent a month total in the hospital. Then his surgeon transferred to Hershey Med Center. Dr. Myers then performed the second stage of th surgery 6 months later in April of 1998. Colton is one of the happiest kids we know, and is due for the third stage of the surgery in the next month or so. I really injoyed you web site, it did help me with some concerns of mine. I am also very happy you son is doing so well. That certainly gives me a feeling of releif with Colton's next surgery.

- 04/12/00 03:17:56

Comments:


Amee Gates - 04/07/00 23:45:34
My URL:http://www.oocities.org/joshuas_heart/
My Email:ameelynns@hotmail.com
Home State - Country:: Colorado
Child(s) Name - Birthdate: Joshua (11/4/99,) Brennan (11/27/96)
Heart Defect(s): HLHS (Joshua)
Hospital - Surgeon:: Denver Children's
Picture Link or Favorite Heart Site: Left Heart Matters

Comments:
Our son Joshua was born at 35 weeks gestation weighing only 3lbs 8oz.(IUGR.) At 1 day of age he was diagnosed with HLHS. Joshua fought for his life for 25 days waiting to grow big enough to recieve a new heart. His PDA was closing, after 4 hours in a c th lab to try and put a balloon in the whole, the docs could do no more for our son. They don't make balloon small enough for a baby Joshua's size. Jesus took Joshua home that night. God Bless everyone who has to go through so much with this defect. T ese children are wonderful fighters who change everyone's lives around them. I have learned some much from such a tiny little boy!!

Lenore Cameron - 04/07/00 14:13:40
My URL:http://hometown.aol.com/lenore1231/myhomepage/index.html
My Email:Lenore1231@aol.com
Home State - Country:: Connecticut
Child(s) Name - Birthdate: Jeffrey, June 6, 1996
Heart Defect(s): HLHS
Hospital - Surgeon:: Boston/Dr. Jonas
Picture Link or Favorite Heart Site: http://hometown.aol.com/lttlhearts/Littleheartspicnicindex.html

Comments:
Anyone from the New England area? The picture taking of our HLHS children will be at Little Heart's annual picnic on June 4th. To read more about it, go to my favorite heart site. To see last years photo of our kids, go to the site under my name. Leno e, mom to Jeffrey, HLHS, almost 4.

Amy Dewhirst - 04/04/00 22:41:02
My Email:amy@udtcorp.com
Home State - Country:: New Orleans,La
Child(s) Name - Birthdate: Taylor Korrin
Heart Defect(s): HLHS
Hospital - Surgeon:: Tulane Hospital Dr.Pigout

Comments:
I am glad to here Joshua is doing well. My daughter Taylor has also had the Norwood three stage procedure, but unfortunately she required a fourth. She is 5yrs old now and in great health, with the help of many doctors and many prayers.She is still taking meds, such as digoxin, captopril and lasix, some names Im sure your familiar with. But in time she will no longer have to take them. She is my miracle baby!

Amy Dewhirst - 04/04/00 17:20:46

Comments:


Amy Dewhirst - 04/03/00 21:59:48
Home State - Country:: New Orleans,La
Child(s) Name - Birthdate: Taylor Korrin 10/21/94
Heart Defect(s): HLHS
Hospital - Surgeon:: Tulane University Hospital
Surgery Name(s) - Date(s):: Dr. Pigout

Comments:
Glad to hear Joshua is doing well.

Liz Frey - 04/03/00 18:10:19
My URL:http://community.webtv.net/goffrey/TYLERSSTORY
My Email:goffrey@webtv.net
Home State - Country:: Iowa,U.S.A
Child(s) Name - Birthdate: Tyler Frey 12-11-96
Heart Defect(s): tetralogy of fallot with pulmonary atresia and MAPCA`s
Hospital - Surgeon:: Mayo Clinic/Dr.Francisco Puga
Surgery Name(s) - Date(s):: unifocalization/central shunt-1-19-97 Blalock Taussig shunt-2-17-98
Picture Link or Favorite Heart Site: The Childrens Health Information Network

Comments:
I love the animated Winnie the Pooh! I am so glad to read that your son is doing so well....he truly is amazing!!!!! Liz Frey

Russell Browning - 04/02/00 07:30:48
My Email:russellbrowning@home.com
Home State - Country:: Oklahoma
Child(s) Name - Birthdate: Austin 3-10-97
Heart Defect(s): HLHS
Hospital - Surgeon:: Childrens OKC
Surgery Name(s) - Date(s):: Knott-Craig

Comments:
I read your page after Austin was born 3-10-97 and it gave me alot of hope. At that time I din't sign your guest book. I just wanted to let you know how much reading this story help me. Austin just turned 3 and has had all 3 surgeries and is doing great. br>
- 04/02/00 02:46:44

Comments:


Roxanne Singh - 04/01/00 18:13:03
My Email:rsingh@aerosoles.com
Home State - Country:: New Jersey - USA
Child(s) Name - Birthdate: Arianna Lall
Heart Defect(s): HPLS
Hospital - Surgeon:: Mount Sinai - Dr. Parnesh
Surgery Name(s) - Date(s):: Norwood Stage 1

Comments:
Arianna was only two days old when we discovered she suffered with HPLS. She was our first child, after trying for five years to conceive a baby. We were devastated and agreed to the 3 stage operation. She was four days old when the first stage was per ormed. She lived for two months and passed away on Sept 28th, 1997. Every day that goes by, I think of her and how much she suffered. I think of her, wishing that she was alive and well. It is good to hear about little Joshua's health. I hope that y u cherish every moment of his life. I will always visit your website to see how Joshua is progressimg. Good luck and take care of that fortunate child. Love Roxanne Singh

ANN MULKEY - 03/31/00 06:41:23
My URL:http://ANN MULKEY
My Email:@HOT MAIL
Home State - Country:: GEORGIA
Child(s) Name - Birthdate: COLE AGE 3
Heart Defect(s): HPLH & Trans Gt Vessels
Hospital - Surgeon:: EGELESTON CHILDRENS DR KIRK KANTER
Surgery Name(s) - Date(s):: 3 STAGE 2 DAYS, 9 MOS & 18 MOS

Comments:
THANK YOU SO MUCH FOR YOUR STORY! WE HAD TWO CHILDREN AGES 14 AND 21 WHEN I BECAME PREGNANT WITH COLE. OUR JOY SOON TURNED TO HEARTACKE WHEN AT 4 MONTHS PREGNANT THEY DISCOVERED THE PROBLEM. WE HAVE ONE TOUGH, STRONG AND DETERMINED LITTLE BOY WHO WE LO E VERY MUCH! BEST OF LUCK TO YOUR ENTIRE FAMILY.

kayla harper - 03/31/00 03:29:57
My Email:kaylaharper@hotmail.com
Home State - Country:: whyalla south australia
Child(s) Name - Birthdate: none
Heart Defect(s): none
Hospital - Surgeon:: none
Surgery Name(s) - Date(s):: none
Picture Link or Favorite Heart Site: none

Comments:
i am sorry

Marcee Gohr, RN - 03/30/00 18:33:23
My Email:mgohr@pulaski.k12.wi.us
Home State - Country:: Wisconsin

Comments:
As a school nurse I like to utilize technology to learn more about health conditions our students are living with. It is amazing what can be done for children. It is also even more amazing how much can be improved in medical care in such a short time.
grandma nash - 03/29/00 21:21:53
My Email:none of yet
Home State - Country:: detroit michigan wayne country
Child(s) Name - Birthdate: miracle marie nash 6-13-98
Heart Defect(s): hlhs
Hospital - Surgeon:: childrens hospital of michigan dr. walters
Surgery Name(s) - Date(s):: firsts and second stage
Picture Link or Favorite Heart Site: left heart matters

Comments:
we need your prayers. there is nothing else they can do for miracle. 3-29-2000

wilfredo santiago III - 03/29/00 20:12:19
My Email:wsantiago@lincoln-action.org
Home State - Country:: LINCOLN, NE. USA

Comments:
I HAVE BEEN HELPPING A FAMILY WHO HAS A CHILD WITH HYPOPLASTIC LEFT HEART SYNDROME. I AM HOPEPING THAT WITH YOUR STORY AND GOD THAT THIS FAMILY WILL FIND THE STRENTH TO KEEP ON LIVING NORMALY. YOU HAVE A WONDERFUL FAMILY MAY GOD BLESS THEM ALWAYS. BEST WISHES MR. & MRS. WILFREDO SANTIAGO

Matt Creedon - 03/27/00 04:19:57
My Email:mcreedon@eznet.net
Home State - Country:: New York
Child(s) Name - Birthdate: Chase-10/8/95
Heart Defect(s): HLHS
Hospital - Surgeon:: CHOP-Meyers
Surgery Name(s) - Date(s):: 2 down, one to go

Comments:
I signed in a few days ago and came back tonight to read some of the letters from others. I am amazed and saddened by some of the stories. I would like to offer my own story of hope for children with HLHS. My son Chase, now 4 is another example of how uccessful the surgical route can be (as long as its accompanied by large doses of love from God and family). He was in intensive care for 7 weeks after the first stage and three weeks after the second. In both cases,there were times when even the doctor did not think he would make it. But he has! And he is the happiest child I have ever seen. He enjoys his little life more than anyone I have ever known. He is truly an inspiration to me. I hope that the people who read this that are preparing for the irth of a child with HLHS see that there is a lot of hope for their child. They should also be aware that the road may be very difficult but it is worth every tear and sleepless night. Afterall these are our children... God Bless all of you.

Joy McLeod - 03/26/00 00:04:44
My Email:joix@xtra.co.nz
Home State - Country:: New Zealand
Child(s) Name - Birthdate: Kylie-Anne 6/12/93
Heart Defect(s): HLHS
Hospital - Surgeon:: Millpark Hospital

Comments:
Joshua you are a gorgeous little man, keep going on your computer and you will be a wizz one day. Well our little girl was diagonsed at 36weeks into the pregnancy, she was born at 4.2kg. Our only hope was to fly to America and go in line to wait for a suitable heart, no one told us about the 3 stage procedure. I almost feel cheated. We chose to tak her home, it was a waiting game, she had an ulcer from stress and would not eat, I was so fearfull she would die from starvation. It was the most frightning time of my life, she passed away 10days later. I am so pleased that there is hope for other chi dren. God Bless you all.

Beverley Pearson - 03/24/00 21:42:44
My Email:sbl.pearson@virgin.net
Home State - Country:: Dorset, United Kingdom
Child(s) Name - Birthdate: Lucy Elizabeth 8/12/99
Heart Defect(s): HLHS, ASD, VSD, PS
Hospital - Surgeon:: Southampton General: Mr Marcus Haw
Surgery Name(s) - Date(s):: TAPVD, 11th December 1999

Comments:
Hi, Our daughter Lucy was born on 8th December, 1999 at Yeovil Hospital, Somerset UK. She was diagnosed with her heart defects at 15 hours of age. She was rushed by ambulance to Southampton General Hospital, Hants where we were told that the future was very bleak as she was extremely sick. We asked the hospital staff to do everything possible for her. At three days of age she underwent a Total Anonomulus Pulmonary Venus Drainage Repair and after 19 days in PICU, made it out onto the Childrens Heart Ward where she stayed for a further two weeks. We have been home with her since the end of January, and life has been very tough, we have great difficulty in getting her to feed well and she is not putting on the weight expected of her. Today 24/3 she has been back to have an echo, and will be re-admitted to hospital within the next three weeks for a cardiac catheter. This hopefully will only be a two day stay, depending on what is found. She might have a cavo pulmonary shunt whilst she is there, as she is starting to get breathless, and her feeding is dropping even further - although the doctors are trying to keep away from putting a naso gastric tube back in place. It's great to read that you son is doing so well. We have been told that the future for Lucy is bleak. This is possibly due to the fact that the doctors don't see very many HLHS children. She is obviously a fighter as at one stage we were told she only had 36 hours to live! I just hope that Lucy does as well as you son. Feel free to contact us if you would like to. Regards

Brandy May - 03/24/00 00:21:11
My Email:BG1724@CS.COM
Home State - Country:: Ohio
Child(s) Name - Birthdate: Olivia Brooke 3/15/97, Brianna Elizabeth 5/3/99
Heart Defect(s): Hypoplastic Left Heart Syndrome
Hospital - Surgeon:: Cincinnati Childrens Hospital - Dr. Peter Manning
Surgery Name(s) - Date(s):: Norwood Procedure 5/12/99 - Fontan Bi-Directional 9/23/99

Comments:
My daughter Brianna was born on May 3, 1999. I had to have a c-section, so our hospital stay was 4 days and 3 nights. I was told that she had a little heart murmur. They discharged us on May 7, 1999. Before we went home the doctor wanted us to go to th childrens cardiology clinic to have her murmur listened to. They seemed to think the same thing, that it was just a little murmur that she would eventually grow out of. So they had scheduled for and echocardiogram on May 26, 1999. That night was our first night at home with her, everything went well. The next night wasn't so great. At this point she was only 5 days old, she had no interest in eating. I had to call her pediatrician(Dr. Emanuel Doyne), he said to ke p an eye on her and the amount of wet diapers in case of dehydration. Later that night she started breathing heavily, so I called him back again and this time he said to take her to the emergency room. By the time that we had gotten there she was in sho k. They immediately had taken her from us and started working on her in the trauma room. All that me and my husband could do was watch and try to understand what was going on. Brianna was lucky enough to have no damage done to her organs. We also were given the three options of 3 stage surgery, heart transplant, or to go the compassionate route(to let her die at home). Of course we wanted to do whatever we could to help her, so we decided to go the route of the three surgerys. So far she has had the orwood Procedure and the Bi-Directional Fontan. I am glad to report that Brianna is doing great. She is now 10 months old 17lbs. 9ozs. She will be going to have a Lung Perfusion Scan done on 3/28/00. We are praying that, that goes well. The doctors s y that she is looking good. We thank God everyday for everything he has done for our Brianna, and for making doctors like Dr. Manning and the Cardiology Staff, and Nurses whom have taken care of her. Dr. Doyne is another reason why she is here today wit us, if he hadn't told us to take her to the emergency room, I hate to think of what might have happened. Everytime she has a check-up with Dr. Doyne, he calls her "our little miracle baby", and thats exactly what she is a "miracle". It's nice to know th t there are others going through the same things as us, although I wish that no-one has to ever go through it. Feel free to e-mail us. God Bless and take care. Brandy & Brian

Regina Mills - 03/23/00 19:19:00
My Email:jdm@btigate.com
Home State - Country:: Wyoming, U.S.A.
Child(s) Name - Birthdate: Jason 10/13/81
Heart Defect(s): HLHS
Hospital - Surgeon:: Bernalillo County Medical
Surgery Name(s) - Date(s):: None Possible, Death

Comments:
Our son was born 19 years ago this October. We were told at that time, when it was discovered he had HLHS; that there was nothing they could do. He was given zero chance of survival and we were told the longest any babys with this lived was 3 days. Nee lless to say we were devastated and totally heart broken. A few years after we lost our son, I was informed of a newspaper article that stated how they were now very successfully operating on infants with HLHS. I felt good about that, yet was also sorry the technology was too late for our precious son. I have gone on living my life, always feeling this and thinking others do not have to go throught he loss we did. I was recently working on our son's Memory Book and thought I should find more updated ma erial on HLHS. Just today, for the first time I have discovered all of this information. I am amazed at my ignorance to the Norwood Procedure and thinking that the parents of babys with HLHS of today have it made. I have been enlightened and spent alot of time crying for others heartache and pain today. I am so grateful that your children have a strong chance of survival today. I just thought the technology would have been even better. I miss my son so very much as I know other parents miss their ang ls. As hard as it is to hear your future possibilites when faced with an HLHS baby, I'm thankful you do have possibilities. I will never forget hearing the Dr. say, "No, there is nothing we can do." And, I feeling he was telling me a lie. God Bless Yo All and I pray for continuing progress with HLHS. I discovered Rick Sparks guest comments here and read with great interest his son Ricky being the first survivor of the Norwood Procedure. He is 16 years old. I cried many tears of joy for them. I wel ome anyone's e-mail to me. Thank you.

R. Mulka - 03/23/00 13:31:09
My Email:scorpion_cb@hotmail.com
Home State - Country:: michigan-USA
Child(s) Name - Birthdate: Anthony Mulka 07-10-96
Heart Defect(s): hypoplastic left heart syndrome
Hospital - Surgeon:: U of M - Dr. Bove
Surgery Name(s) - Date(s):: completed all surgeries

Comments:
Tony is doing great. He is one very active little boy. I remember during Tony's second surgery we were in the Icu and your son was only a couple of beds away. He was the one with the Elmo on his oxygen hood looking down on him.

Matt Creedon - 03/23/00 04:42:34
My Email:mcreedon@eznet.net
Home State - Country:: New York, Yates Cty
Child(s) Name - Birthdate: Chase, 9/95; Asa, 10/89
Heart Defect(s): Chase-HLHS; Asa Coarctation of Aorta
Hospital - Surgeon:: Pittsburgh, Meyers
Surgery Name(s) - Date(s):: Chase-Stages 1&2 of Norwood

Comments:
We are very glad to hear of another boy doing very well. Our son still has one stage left but is doing great at 4 yrs of age. Our prayers are with all of you.

Cynthia D. Frazier - 03/22/00 14:44:34
My Email:cdfrazier@gdph.state.ga.us
Home State - Country:: Georgia

Comments:
I work with Babies Can't Wait and I have a child on my caseload with this condition. I appreciate your disclosure of your experience. I gave the information to the family that I am working with. Thank you again!

Shirlene - 03/22/00 04:21:42
My Email:AZSopey@aol.com
Home State - Country:: az
Child(s) Name - Birthdate: Logan 12/8/97
Heart Defect(s): hypoplastic right ventricle
Hospital - Surgeon:: UofM / Dr Bove
Surgery Name(s) - Date(s):: 12/16/97 3/20/98 5/19/99

Comments:
Our son Logan was born with hypoplastic right ventricle, vsd and l-trasposition of great arteries,Logans 1st surgery went smoothly 2nd surgery went well but had pleural effusions for 3 months in which we were hospitalized, the 3rd surgery was performed bu was reversed after 7 days due to left pulmonary artery pressure. We are unsure of next step at this time. Has anyone else had to have the fontan taken down? If so please contact us to let us know what to expect. Thank you

Kelly Riley - 03/20/00 23:43:39
My Email:akarilo@aol.com
Home State - Country:: OK, USA
Child(s) Name - Birthdate: Madoline Grace
Heart Defect(s): Possibly HLHS
Hospital - Surgeon:: None yet
Surgery Name(s) - Date(s):: " "

Comments:
My wife is 5 and a half months pregnant, and our first ultrasound was last Monday. We were re-called for a second on Friday. The results showed a large difference in size between the left and right sides of the heart. The doctor informed us if the poss bility/probability of HLHS. I did some research (found your page) which offered some releif. Our next (more extensive) ultrasound is tomorrow, and will shed more light on the situation. I am praying for the best, but am willing to endure whatever for t e survival of our first child. I will update you on the results of our findings. Thank you for compiling the information on your page; As I stated earlier, It has offered some desperatly needed releif. thank you again, Kelly and Tiffany Riley

Lynda Pike - 03/16/00 19:04:35
My Email:lpike@bigsky.net
Home State - Country:: Montana
Child(s) Name - Birthdate: Riley Joe Howard
Heart Defect(s): hypoplastic elftheart syndrome

Comments:
My grandson, Riley Joe Howard, is due 4/26/00 and has been diagnoised with hypoplastic leftheart syndrome. Anyone with information on treatment facilities etc. please forward to lpike@bigsky.net.

Jill Howard - 03/16/00 16:14:20
My Email:thoward@nidlink.com
Home State - Country:: Idaho, USA
Child(s) Name - Birthdate: Riley due 4/26/00
Heart Defect(s): hypoplastic left heart
Hospital - Surgeon:: Dr. Johnson

Comments:


Nicole - 03/15/00 03:40:09
My Email:nmashburn@go.com
Home State - Country:: al - usa
Child(s) Name - Birthdate: darcy 7-9-98
Heart Defect(s): hlhs

Comments:
We found out Darcy had HLHS upon autopsy. She died at a week of age. Should it have been picked up at the 18 week sonar? Can it happen again? I just found this wonderful site. Any help would be appreciated.

Charlie Shanafelt - 03/14/00 22:40:36
My Email:chshan@aol.com
Home State - Country:: Iowa
Child(s) Name - Birthdate: Leah - 4/15/88
Heart Defect(s): Hypoplastic left ventricle
Hospital - Surgeon:: Omaha Childrens Hospital

Comments:
Leah was born without many options. Surgery at that time was still in the experimental stage. We were told of a surgeon in Boston, that mortality was 100% with a life expectancy of up to a few months. Heart transplant was also a option, but finding a d nor unlikely. She died in our arms 3 days later. It sounds like a lot of progress has been made in the last 12 years. God bless you and your miracle child!

Pam & Steve Hauge - 03/14/00 03:59:43
My Email:pchauge@clear.lakes.com
Home State - Country:: Austin MN
Child(s) Name - Birthdate: Kelsey Marie 3-16-97-3-30-97
Heart Defect(s): Hypoplastic Left Heart & RTS

Comments:
Kelsey Marie touch many lives in her brief time with us, we hold her in our hearts forever. Thank you for sharing your stories. God Bless all of you. Pam & Steve

David Stringer - 03/13/00 18:56:28
My Email:dstring@ix.netcom.com
Home State - Country:: Michigan

Comments:
Hello- I am a writer doing an article on Dr. Bove for the U-M Medical School Alumni News. I have met with him and the family of one of his very recent patients, and I just wanted to check in here. I may have a few questions to ask you, but I'm not sure right now what they are. If it is OK for me to contact you by e-mail, let me know at the address above. Thanks, David Stringer

Debbie - 03/12/00 11:00:38
My Email:geoff_deb@one.net.au
Home State - Country:: Sydney NSW Australia
Child(s) Name - Birthdate: Joshua Geoffrey - 28/11/99
Heart Defect(s): Hypoplastic left heart

Comments:
Our Joshua passed away when he was 3 and a half days old, we did not know he had a heart condition when he was born, and it was not picked up until he was nearly 2 days old. We are coming to terms with his death now, and slowing but surely its getting a little bit better, but its still early days, if anyone whats to share there experiances, please fe

CINDY ARGILA - 03/12/00 00:15:19
My Email:Kris95@gateway.net
Home State - Country:: GEORGIA
Child(s) Name - Birthdate: GABE/DUE IN MAY
Heart Defect(s): HLHS
Hospital - Surgeon:: EGLESTON HOSPITAL
Surgery Name(s) - Date(s):: NORWOOD/IN MAY 2000

Comments:


SHARON HOLLOWAY - 03/10/00 23:05:22
My Email:SHARONHF7@YAHOO.COM
Home State - Country:: CHGO,IL
Child(s) Name - Birthdate: 05/24/00
Heart Defect(s): HLHS
Hospital - Surgeon:: LOYOLA UNV HOSP
Surgery Name(s) - Date(s):: DR.HANANI

Comments:
I HAD WROTE EARILER AND GAVE WRONG EMAIL ADDRESS

SHARON HOLLOWAY - 03/10/00 16:08:02
My Email:SHARONHF@YAHOO.COM
Home State - Country:: CHICAGO IL
Child(s) Name - Birthdate: 05/24/00
Heart Defect(s): HLHS
Hospital - Surgeon:: LOYOLA UNV CHGO
Surgery Name(s) - Date(s):: DR HANANI

Comments:
HI MY NAME IS SHARON AND I WAS TOLD THAT MY UNBORN FETUS HAS HLHS AT 15WKS OF MY PREGANCY AND DIDN'T KNOW HOW TO FEEL IT WAS IF I WAS LOST AND DID NOT KNOW WHICH WAY TO GO. BUT WE TO GOT CONNECTED TO DR. BOVE, BUT AFTER FIGHTING WITH MY INSURANCE COMPANY E HAD TO GO WITH A DOCTOR HERE IN CHGO WE MEET WITH HIM AND FOUND OUT HE ACTUALLY WORK WITH DR. BOVE AND WAS HERE IN CHGO IN NOV, OF 99 FOR A SEMINAR AT LOYOLA SO I FELT A LITTLE BETTER BUT AFTER TALKING TO DR.BOVE HE MADE ME FEEL GOOD ABOUT EVERYTHING TH T WAS ABOUT TO HAPPEN BUT DEEP DOWN I WAS STILL LOST BECAUSE ME AND MY HUSBAND HAD NEVER HAD TO GO THROUGH THIS BEFORE.AND DID NOT HAVE A LOT OF PEOPLE ON OUR SIDE BUT WE PRAY EVERYDAY TO ASK GOD TO DIRECT US AND TO GIVE US THE STRENGHT THAT WE WILL NEED TO HANDLE ANYTHING THAT COMES OUR WAY. SORRY ABOUT MY LEETER BEING SO MUCH, BUT TO READ YOUR STORY GAVE US SO MUCH HOPE AND STRENGH JOSHUA SOUND LIKE A GIFT FROM GOD HOW IS HE AND I WISH THAT I COULD HUG YOU BOTH JUST FOR WRITING AND SHARING YOU STORY FOR PEOPLE LIKE ME. HOPE TO HEAR FROM YOU. THANKS AND GOD GOD BLESS.SHARON

Sue Wolodkewitsch - 03/09/00 03:13:37
My Email:Heartpress6@aol.com
Home State - Country:: NC, Wilmington
Child(s) Name - Birthdate: Cody 6/25/97
Heart Defect(s): HLHS
Hospital - Surgeon:: Duke, Ungerlieder
Surgery Name(s) - Date(s):: 3rd. - FONTAN
Picture Link or Favorite Heart Site: MANY

Comments:
Our son is on Captopril 1mg/ml three times daily and one baby asprin per day. He as you can see will be three shortly and is doing very well. He has no major problems or restrictions and hangs very well with his older siblings, 14,10,4. One thing we ha e noted is that he does seem to sweat excessively even when the conditions do not warrent it for us. Other than that he is as you have said a miracle child. Any comments you have are more than welcome. Just a note Duke U. is creating a data base as I'm sure Michigan is on the children with HLHS they have treated. My understanding is that this info will be shared with hospitals nationwide to further the treatment of this condition. If you have any info that may help please let us know. Thank You. Sue and Scott Wolodkewitsch 16 Creekstone Lane Castle Hayne NC. 28429 910-675-3450

Kim Mortensen - 03/08/00 18:40:00
My Email:rexhavoc@gateway.net
Home State - Country:: Nebraska, USA
Child(s) Name - Birthdate: Zoe Sierra Babbel - 3/4/2000
Heart Defect(s): HLHS
Hospital - Surgeon:: Children's Hospital, Omaha, NE - Dr Duncan
Surgery Name(s) - Date(s):: First Stage of the three stage repair - right now, 3/8/00

Comments:
Zoe is the infant daughter of very dear friends of ours. Even as I write this, the repair is taking place. We are awaiting the outcome.

Michelle Morris-Whitson - 03/07/00 15:08:10
My Email:mmorriswhitson@ikon.com (work) whitsonmichelle@hotmail.com
Home State - Country:: Georgia, USA
Child(s) Name - Birthdate: Christopher Ryan Whitson 7/18/99
Heart Defect(s): HLHS
Hospital - Surgeon:: Egleston Children's Healthcare of Atlanta; Dr Kirk Kanter :)
Surgery Name(s) - Date(s):: Norwood 7/26/99; Fundoplication (from plueral effusion due to Norwood) August 21, 1999; Glenn 3/3/00
Picture Link or Favorite Heart Site: WON'T LOAD!!!

Comments:
Thank you for your story! Christopher's is very similar! I am at the hospital computer right now, awaiting the Dr's discharge paperwork to go through--after a four day post-op!!!

Sheila Vaughan - 03/07/00 05:20:21
My Email:sheilav22@aol.com
Home State - Country:: new york, USA
Child(s) Name - Birthdate: michael 10/92
Heart Defect(s): hypo plastic left heart
Hospital - Surgeon:: Chop Dr. Norwood
Surgery Name(s) - Date(s):: Norwood Procedure

Comments:
My cousin Michael had the Norwood procedure done in three stages. He curently lives in Ireland with his mom and four other siblings. He thank God is doing terrific.

Sheila Vaughan - 03/07/00 05:11:22
My Email:sheilav22@aol.com
Home State - Country:: new york, USA

Comments:


Debra Arnold - 03/06/00 20:32:06
My Email:darnold2@stny.rr.com
Home State - Country:: New York
Child(s) Name - Birthdate: Nathan 7/7/99
Heart Defect(s): HLHS
Hospital - Surgeon:: Syracuse-Alfieris
Surgery Name(s) - Date(s):: Norwood7/8-Bi-Dir 10/18

Comments:
We just recently bought a computer so I'm just now finding the internet sites and support groups. We found out about Nathan's condition when I was just 30 weeks pregnant on a routine ultrasound. Nathan is doing great and is hitting all his milestones. t 8mo he weighs almost 23 lbs and is a little over 28in long. I thank-you for providing other web sites. please feel free to contact me if you would like to know more information. Thanks again. Deb Arnold

theresa bailey - 03/06/00 17:46:57
Home State - Country:: illinois
Child(s) Name - Birthdate: ethan hultgren 03/02/00
Heart Defect(s): hypoplastic l. heart
Hospital - Surgeon:: st. francis /dr. geiis
Surgery Name(s) - Date(s):: first to be on 03/09/00

Comments:
My nephew was born last week at St. Francis Hospital in Peoria, Il. He is schedule to have his first surgery this Thursday. We are all praying and hoping he will do great! Thanks for the information- your web page really helped

Mary Durkay - 03/05/00 03:27:47
My Email:durkay1@aol.com
Home State - Country:: West Texas
Child(s) Name - Birthdate: John Anthony II 05/12/96
Heart Defect(s): hypoplastic left verticle
Hospital - Surgeon:: San Antonio, Texas

Comments:
Our son was born Mother's Day May 12, 1996 weighing in at 9 lb 6 oz, he died on May 22, 1996 at home. I am only sorry he could not live, I wish everyone the very best. I see my son's eyes in all the children diagnosed with this. God bless you and keep you. Your son looked so much like mine. Take care of him, and if anyone wants to talk email me. Mary

Scott Sheriff - 03/04/00 17:57:12
My URL:http://jesuschrist.iscool.net
My Email:scott.sheriff@iname.com
Home State - Country:: SC, USA
Child(s) Name - Birthdate: Andrew
Heart Defect(s): None, praise God!

Comments:
Hello from your distant cousin in Easley, SC

Cool Family Site

A Cool Youth Site



Roger Marin - 03/04/00 04:30:18
My Email:r_marin@yahoo.com
Home State - Country:: Canada
Child(s) Name - Birthdate: Bailey Marin march 1
Heart Defect(s): left heart syndrom
Hospital - Surgeon:: Toronto sick kids

Comments:
I just found out yesterday that he had left heart syndrom and you havent found out what we can do for him but he was premature so there are some complications so you are so scared i just want to say thank you for you site cause im so happy to hear of a su ces and ill pray for everyone that has to go through this Roger

Roxanne Singh - 03/02/00 13:54:54
Home State - Country:: NJ, USA
Child(s) Name - Birthdate: Aranna Lall 7/29/97
Heart Defect(s): HPLH
Hospital - Surgeon:: Mount Sinai - Dr. Parnesh
Surgery Name(s) - Date(s):: Stage 1 Norwood 8/4/97

Comments:


Michelle Y Brickey RN - 03/02/00 03:02:37
My Email:brickfam@home.com
Home State - Country:: MI-USA

Comments:
I am a home health nurse who takes care of several children w/ hlhs. Thanks for your story.

Francesca Moresco - 03/01/00 13:07:15
My Email:fmoresco@cuoa.it
Home State - Country:: Italia
Child(s) Name - Birthdate: Massimiliano 14/10/1992
Heart Defect(s): Cuore sinistro ipoplasico
Hospital - Surgeon:: Padova - Italy
Surgery Name(s) - Date(s):: Richiesta informazioni - 1/3/2000

Comments:
Mi dispiace, non parlo inglese e lo capisco poco. Il mio bambino si chiamava Massimiliano. Era nato il 14 ottobre 1992. Alla nascita gli è stata diagnosticata la patologia "cuore sinistro ipoplasico". Dopo i due interventi di Norwood (il primo intervento effettuato il 17 ottobre 1992, il secondo interven o effettuato il 3 maggio 1993) ha subito il terzo intervento di Fontan (effettuato il 6 giugno 1994). Per qualche tempo sembrava che tutto proseguisse per il meglio, poi, verso il mese di novembre è stato ricoverato all'Ospedale di Padova- Italia (dopo av va subito i tre interventi) e dopo una serie di esami gli è stata diagnosticata una enteropatia con perdita di proteine. Sono state fatti molti esami per capire la causa di questo problema, ma mio figlio è morto il 27 febbraio 1995. Ora so che l'intervent di Fontan può causare questa complicazione, ma vorrei capire di quali cure necessitava. Dove mi posso consultare? C'è un sito che fornisce in maniera dettagliata queste informazioni? Il mio desiderio è che nessun bambino debba soffrire fino alla morte, c me è stato per il mio bambino. Sembra, infatti, che ancora non si conosca la cura per la risoluzione di questo problema. Se potete fare qualcosa per me, Vi ringrazio fin da ora. Potete, eventualmente, scrivere anche a questo indirizzo e-mail: vladi60@tin.it. Francesca Moresco

Tina Cornwell - 03/01/00 03:28:41
Home State - Country:: Mt. Sterling, KY
Child(s) Name - Birthdate: Matthew, 11-29-99
Heart Defect(s): HLHS
Hospital - Surgeon:: Kosair, Dr. Austin
Surgery Name(s) - Date(s):: Norwood, 12-3-99

Comments:
I just wanted to congratlate Joshua and tell you that I lost my son after his first sergury on Dec 22,1999. I feel so alone and don't understand why it had to happen to my son. I'm 23 yrs old and single and he was my first child. Thanks for your story. Sincerely, Tina Cornwell

Mark Birchfield - 02/29/00 01:23:10
My Email:charlieb1@citcom.net
Home State - Country:: North Carolina USA
Child(s) Name - Birthdate: Mark Birchfield 2/16/86
Heart Defect(s): Hypertrophic Obstructive Cardiomyopathy
Hospital - Surgeon:: Dr.McGovern
Surgery Name(s) - Date(s):: Don't know yet

Comments:
Hi, Ilike Tigger to I am 14 years old and about a week ago I found out that I have Hypertrophic Obstructive Cardiomyopathy.

Vivian Wray - 02/27/00 05:38:39
My Email:14hams@home.com
Home State - Country:: Maryland, USA
Child(s) Name - Birthdate: Noah Michael 11-10-99
Heart Defect(s): HLHS
Hospital - Surgeon:: Johns Hopkins- - Marc Redmond
Surgery Name(s) - Date(s):: First Stage- Norwood, BT Shunt - 11-12-99 and again replace BT shunt and reconstruct pulmonary arteries on 12-30-99
Picture Link or Favorite Heart Site: Left Heart Matters

Comments:
Noah was born looking very healthy and we were unaware of his heart condition before birth. He was a long awaited child after 4 years of infertility. He has had an extremely complicated go at life and we are so fortunate that he is still here with us. or this miracle I thank God every day. He is now 15 and 1/2 weeks old and is still in the hospital. He has never been home, although the docs have mentioned the possibility this week. He still has a huge blood clot in hid femoral vein that runs up into his inferior vena cava. He has had lung issues due to a deviated atrial septum. He had to have the BT shunt replaced due to a narrowing and clot and when they examined it there was fungus in it. He was treated with a highly toxic drug to combat any fun us that may still be in there. He did well with God's help and guidance. He has never eaten by mouth and is only 9 pounds at almost 4 months old. We are hoping to get him home and fatten him up. He will need stage 2 in a couple of months. Please keep us in your prayers as I will keep all the HLHS kids in mine, too. thanks and Good Luck and God Bless. Vivian, Mike and Noah Wray

Jonathan Stevenson - 02/26/00 03:27:31
My Email:jonathan@fnrcomputers.com
Home State - Country:: NC
Child(s) Name - Birthdate: Dustin Howarth - March 6, 1995
Heart Defect(s): Hypo plastic left heart syndrome
Hospital - Surgeon:: Duke Hospital/

Comments:


Lisa Thompson - 02/25/00 13:39:05
My Email:lisagibson14@hotmail
Home State - Country:: Georgia
Child(s) Name - Birthdate: 2-18-85

Comments:


Keith Watson - 02/24/00 22:17:52
My Email:kw2ranger@msn.com
Home State - Country:: Ohio - USA
Child(s) Name - Birthdate: expected 6/28/00
Heart Defect(s): HLHS
Hospital - Surgeon:: TBD

Comments:
My wife Chris and I were informed of our babies condition week ago. We are learning as much as we can about what is going to happen.

GLORIA DIXON - 02/24/00 20:34:12
My Email:gloriadixon@mindspring
Home State - Country:: georgia
Child(s) Name - Birthdate: KAITLYN DIXON
Heart Defect(s): HYPERTROPHIC OBSTRUCTIVE CARDIOMYOPATHY
Hospital - Surgeon:: NO SURGERY AS OF YET

Comments:
KAITLYN IS MY GRANDAUGHTER AND A TWIN AND WAS BORN OCT. 4, 1999. WE ARE SO WORRIED ABOUT HER PLEASE PRAY FOR HER HEALTH.

Amanda Rousseau - 02/23/00 21:45:01
Home State - Country:: Gonzales,LA
Child(s) Name - Birthdate: due 5/9/00
Heart Defect(s): left heart syndrome

Comments:
Thanks for sharing this story with me. It made me feel better knowing that my son has a chance to make it.

Tony Palermo - 02/23/00 19:37:29
My Email:tpalermo@home.com
Home State - Country:: Ottawa, ON CANADA
Child(s) Name - Birthdate: Austin Alexander - Dec 9 1998
Heart Defect(s): HLHS
Hospital - Surgeon:: Montreal Childrens

Comments:
Excellent site - nice to see Joshua is doing great. It's truly a blessing. Unfortunately, our little angel died on Dec 22 1998, shortly after the first procudure from viral complications (the procedure itself was quite successful). I was just browsing around today because our 2 year old was just diagnosed today with a murmor. The doctors don't think it's serious though at this point (thank God) and chances are it's not HLHS because of the nature of the disease. I was just doing some more research when I came across your site. Thought I'd drop by. Keep up the good work. It's sites like yours that keep other parents, relatives and friends insprired in those "final hours". Tony

Shauna Erkenbeck - 02/21/00 04:16:02
My Email:serkenbeck@aol.com
Home State - Country:: seattle, Washington
Child(s) Name - Birthdate: Kendall 11-14-95
Heart Defect(s): HLHS
Hospital - Surgeon:: Dr Lupinitti
Surgery Name(s) - Date(s):: NORWOOD

Comments:
I have a beautiful little girl that has hlhs. she was not as lucky as your little guy. They did not diagnose it and she almost died at 5 days old. She has had alot of developmental delays because of this. But is doing great now. She is still not walk ng and does not really understand why she cannot do this. We love her so much. We had another baby 7 months ago and he is just fine and Kendall just loves him. Kendall is still on meds. She takes digoxin, captopril and coumidan. She is such a joy. I w uld love to hear how your little boy is doing now.

natalie blerot - 02/21/00 01:31:57
Home State - Country:: winnipeg,canada
Child(s) Name - Birthdate: Jacques 01-22-99
Heart Defect(s): hlhs
Hospital - Surgeon:: Edmonton Dr. Reybeka
Surgery Name(s) - Date(s):: 01-25-99,04-11-99

Comments:
I love to read all the encouraging stories sent to your guestbook and hope our son will also be a success story

natalie blerot - 02/21/00 01:28:33
Home State - Country:: winnipeg,canada
Child(s) Name - Birthdate: Jacques 01-22-99

Comments:


Nancy ortega - 02/20/00 01:05:23
My URL:http://www.yahoo.com
My Email:nancycalva@yahoo
Home State - Country:: Dallas, Texas
Child(s) Name - Birthdate: Jonathan 10-5-99
Heart Defect(s): hypoplatic left heart
Hospital - Surgeon:: Childrens Medical Center

Comments:
I had twins 10-5-99, Jacob and Jonathan. Unfortanetly, I was not told of one having anything wrong with his heart. I took them home, and two days later, 10-10-99 I rushed Jonathan to the hospital. To our misfortune, it was to late. How fortunate you are t have your son. I can not even believe this has happened, even though it has been four months. I wish every parent with a child with any heart condition the best of luck. May God be with you and your child.

Ellie - 02/19/00 04:12:10
My Email:satchel@nidlink.com
Home State - Country:: Idaho
Child(s) Name - Birthdate: Avery-due:4-15-00
Heart Defect(s): HLHS

Comments:
Thanks so much for the positive information on the 3 stage surgery and other info. My husband and I found out about the defect at 24 wks. I'm now at 32 weeks and am researching as much as I can as to what our options are and also the possible outcomes. Th nks for giving us hope about the surgeries if that happens to be an option for us. Hope your family is well!

Tammy Anderson - 02/17/00 00:39:12
My Email:ttwinkles@yahoo.com
Child(s) Name - Birthdate: Joshua Gregory Anderson
Heart Defect(s): none
Hospital - Surgeon:: none

Comments:
Your baby is so beautoful. I was very happy to read that things are going good for him. My cousin's baby we were just told has congestive heart failure. I was just browsing around and found your site. She was told about the three stage operation. If ou can give me any information I would appreciate it Thank You!!!!!

Erica and Brandon Hoggard - 02/16/00 23:03:48
My Email:hoggard3@yahoo.com
Home State - Country:: Arkansas
Child(s) Name - Birthdate: Audrey 6 months
Hospital - Surgeon:: Memphis NICU

Comments:
It is so great to see your little boy doing so well with such a rare condition..

Bev Pearson - 02/16/00 13:49:56
My URL:http://creative@screwfix.com
Home State - Country:: England
Child(s) Name - Birthdate: Lucy
Heart Defect(s): Too many to list
Hospital - Surgeon:: Southampton UK - Mr Marcus Haw
Surgery Name(s) - Date(s):: 11/12/99

Comments:
Thanks for the info on your site. My daughter was born with ASD, VSD, Hypoplastic Left Heart, Transposition of the Great Arteries and Total Anomolus Pulimnary Venus Drainage. She underwent the first stage at 2 days old and we are now waiting for her to go in for the second stage. It was all a total shock, as nothing was picked up on any of my scans. Good luck to you all, I hope that Joshua continues to keep well.

Liz - 02/14/00 16:25:19
My Email:bubbles.buttercup@gateway.net

Comments:
Thanks for you very informative website.

JUAN AND SARAH - 02/11/00 06:14:33
My Email:juanac@pdq.net
Home State - Country:: TX, USA
Child(s) Name - Birthdate: JUAN JR.- 2/5/98-4/9/98
Heart Defect(s): HLHS
Hospital - Surgeon:: TEXAS CHILDREN'S
Surgery Name(s) - Date(s):: NORWOOD - 2/12/98

Comments:
TWO DAYS AFTER JUAN'S BIRTH HE WAS DIAGNOSED WITH HLHS AND UNDERWENT SURGERY 1 WEEK LATER. AFTER 3 WEEKS JUAN CAME HOME WITH HIGH HOPES OF SURVIVAL. UNFORTUNATELY HE PASSED AWAY AT 2 MONTHS OF AGE. THE CAUSE OF DEATH WAS DUE TO AND INFECTION IN HIS BLOOD WE WERE SURPRISED AT ALL THE E-MAILS FROM PEOPLE WHO WENT OR ARE GOING THROUGH THE SAME ORDEAL. MAY GOD BLESS THEM AND THEIR FAMILYS. JUAN & SARAH

crystalm lenhart - 02/10/00 18:38:36
My Email:clen77@yahoo.com
Home State - Country:: florida
Child(s) Name - Birthdate: 2/20/00
Heart Defect(s): left heart sydrome
Hospital - Surgeon:: orlando
Surgery Name(s) - Date(s):: ? not know yet!
Picture Link or Favorite Heart Site: dont have one yet

Comments:
Please say a special prayer for this un born child.It is my sister bady. We are very scared and all alone and we really need god with out him we can not do this. This is her first child and she is only 19years old. His name will be Amanual. From the bible meaning gift from god. thank you and god bless, Crystal and Ashley Lowery

Brian and Ginny Ruch - 02/10/00 00:54:04
My Email:Morrison944@cs.com
Home State - Country:: MI
Child(s) Name - Birthdate: N/A (unborn)
Heart Defect(s): HLHS

Comments:
At our 19 week ultrasound Brian and I were informed that it seems to be the baby has HLHS. We are just waiting to meet with a Pediatric Cardiologist and a few other specialist to determine the condition. As of right now they (OB) are calling it HLHS. W just wanted to do some researching and found your "inspirational" page. It gives us hope that our unborn child could live a life like Joshua's. Thank you!

Anastasia Huelsman - 02/09/00 03:07:18
My Email:Anastasia@FMTC.net
Home State - Country:: Tega Cay, SC
Child(s) Name - Birthdate: Allegra Elizabeth-expected July 4, 2000
Heart Defect(s): HRHS and Tricuspid Atresia
Hospital - Surgeon:: CMC-surgeon yet unkown
Surgery Name(s) - Date(s):: unkown until birth

Comments:
This site gives my husband and I hope for our unborn daughter. Thank you.

Brenda Pisch - 02/09/00 02:12:58
My Email:pisch@iaw.on.ca
Home State - Country:: canada
Child(s) Name - Birthdate: Julie Ann Pisch 11/17/98-11/28/98
Heart Defect(s): HLHS/Coarctation of the Aorta
Hospital - Surgeon:: Toront Sick Kids
Surgery Name(s) - Date(s):: repair Aorta 11/19/98, 1st of Norwood 11/21/98

Comments:
In my 20th week of pregnancy, i was diagnosed with polyhydramnios (to much amniotic fluid)my doctor kept sending me for ultrasounds. When Julie was born, the pediatrician said she had a heart murmer. She wasn't able to oxygenate the lower half of her body they told me the next day. She was sent to Hamilton and then to Sick Kids in Toronto that night. They told us what was wrong. She had HLHS and Coarctation of the Aorta. Had her surgeries and stayed on the EMCO machine until she died on Nov 28,'98. How wer the doctors able to detect the heart defects in some of the other cases before they were born? Glad to hear that Joshua is doing good. Thank You ever so much for this web sight. Been feeling that i had to of done something wrong in my pregnancy to cause er heart defect. Brenda

stewart huey - 02/08/00 16:51:28
My Email:stewart@fnbop.com
Home State - Country:: Mississippi
Child(s) Name - Birthdate: Jonathan Presley 2-2-2000
Heart Defect(s): currently in surgery for Hypoplastic
Hospital - Surgeon:: Univ Hospital Michigan
Surgery Name(s) - Date(s):: 2-8-2000

Comments:
jonathan is my nephew and is currently undergoing the hypoplastic surgery in ann arbor. i was looking on the web and came across your sight. hope all is still well with joshua. stewart

Christina Anderson - 02/08/00 16:32:45
My Email:canderso@brinks.com
Home State - Country:: Texas - USA
Child(s) Name - Birthdate: Jonathon Paul Presley; 2/2/00

Comments:
God bless you for sharing your story. I have a cousin whose child is in surgery in Michigan today (2/8/00) for HLHS. Your story of survival and hope make me hopeful for his success.

Pat and Karen Marshall - 02/08/00 05:54:11
My Email:MARSHKP@msn.com. or TWINS-R-US
Home State - Country:: saginaw, Michigan
Child(s) Name - Birthdate: River 6-11-98
Heart Defect(s): HLHS
Hospital - Surgeon:: U of M Dr. Bovy
Surgery Name(s) - Date(s):: Norwood 6-98 Hemi-fon. 10-98 Font. 1-27-00
Picture Link or Favorite Heart Site: Would love more info.

Comments:
My son is a twin and his twin was born perfectly normal and River was born with HLHS. He is a success story also but is only 20 months old now. I would love to hear more from the older hypro children. What is the future. Thankyou for sharing your stor what a wonderful site. I would love to hear more.

Kim Wiginton - 02/07/00 18:57:09
My Email:blondiekw@hotmail.com
Home State - Country:: Michigan
Child(s) Name - Birthdate: 5-12-82
Heart Defect(s): Hypoplastic Left Heart Syn.
Hospital - Surgeon:: University of Michigan

Comments:
Hello My name is Kim Wiginton. I was born with a twin sister named Katie who died a month after birth from Hypoplastic Left heart syndrom. I am currently 17 years old. I try to live my life to the fullest because I feel that I live my life for both of us I have always been curious about HPLHS and I try to read up on as much information as I can. I saw your web page and I was touched by Joshua's story . I just wanted to say that you have an angel send from God himself. God bless.

Lynn Sanders - 02/06/00 02:28:36
My Email:LYNSANDER@supanet.com
Home State - Country:: Bucks, UK
Child(s) Name - Birthdate: Evan Sanders 10/05/96
Heart Defect(s): Hypoplastic Left Heart

Comments:
Thank you for poviding this web site to give other people hope. It seems that you in the US are far more advanced that we are here, although the Left Heart Matters group in the Uk are pushing for changes. Despite have this condition diagnosed early in my pregnancy in 1996 my husband and I were told that there were not really any options available to us, the picture painted was incredibly bleak and I have since found out that we were not fully informed of o r options. If I had known then what I know now I would have been able to seek advice in the States. I have since had a beautiful healthy little girl who is the absolute image of the brother she will never be able to get to know.

denni and jeff herbetko - 02/05/00 22:09:59
My Email:jeffden1@earthlink.net
Home State - Country:: pa
Child(s) Name - Birthdate: nicolas
Heart Defect(s): hlhs
Hospital - Surgeon:: dupont medical, dr. norwood

Comments:
our baby nicloas is due 2 months from now and we just found out he has hypoplastic left heart syndrome. we just found out 2 days ago and this is still very hard to absorb. this is our first child and i am having a hard time feeling anything but desperate. we are trying to get info any way we can, reading your story definately made my heart feel a little better. if you know of any support groups or other people we could talk to we would appreciate an e-mail. thank you and god bless . denni and jeff herbet o

Jolinda - 02/04/00 18:50:49
My Email:steno@excelonline.com
Home State - Country:: Kentucky
Child(s) Name - Birthdate: Kambryn - 1/27/00
Heart Defect(s): HLHA
Hospital - Surgeon:: Cincinnati Children's Hospital

Comments:
The baby info above is our friends' baby. She had the 1st procedure done January 30. She is doing well, but don't know when she can go home. Thanks for your story. It is an encouragement to all of us.

phil couch - 02/04/00 01:27:02
My Email:pcouch@bton.ac.uk
Home State - Country:: England

Comments:
I am working in a peadiatric itu as i write this, looking for websites that will help other parents and siblings understand more about the things that go on here. hope all is well and continues to be so. best wishes to you all phil

- 02/03/00 18:45:36

Comments:
You have given us hope. Thank you.

Maria Lima - 02/03/00 01:32:45
My Email:palomapr@yahoo.com
Home State - Country:: San Juan, Puerto Rico
Heart Defect(s): HLHS

Comments:
My beloved neihbors/friends have a one week child who successfully passed through the first stage of the Norwood Procedure today. The next 48 hours are crucial. Please pray for him. His name is Alejandro José. Thanks.

Regina Roberts - 02/02/00 20:51:54
My Email:andrear@iswt.com
Home State - Country:: TN
Child(s) Name - Birthdate: not yet born

Comments:
Hi, I just wanted you to know of the hope that your page has given our family. My niece is now 5 months pregnant and has been told there are severe heart defects,hypoplastic left sided syndrom being suspected. They are to meet with a cardiologist tomorrow. We are all devasted and scared to say the least. My sister was able to find this site and reading it gives us all great hope. This little one already means so much to all of us and through Gods gr ce He will see us through this and our little Avery will be fine. Thank You for this site and the hope that it brings. It is wonderful to know that Joshua is doing great. Please keep this baby of ours in all of your prayers, we know that God is in control Gina

Kevin Monk - 02/02/00 04:39:52
My Email:Cl03858@deere.com
Home State - Country:: Kentucky, USA
Child(s) Name - Birthdate: Kambryn 27 Jan 00
Heart Defect(s): HLHS
Hospital - Surgeon:: Childrens Hospital Medical Center - Dr. Peter Manning
Surgery Name(s) - Date(s):: 30 Jan 00 - Norwood Procedure

Comments:


Kris Linquist - 02/01/00 22:03:00
My Email:klinquist@hotmail.com
Home State - Country:: Minnesota - USA
Child(s) Name - Birthdate: Kyler 11-18-99
Heart Defect(s): HLHS
Hospital - Surgeon:: Children's - Mpls Dr. Helseth
Surgery Name(s) - Date(s):: Norwood 11-26-99 Modified 12-1-99, Coarc Repair 1-28-99

Comments:
Thank you for your article. It is inspiring for families that still have more procedures to go through.

Shashonna Dupree - 02/01/00 16:34:40
My Email:Luvpenny81@aol.com
Home State - Country:: New York
Child(s) Name - Birthdate: Isiah Jordan
Heart Defect(s): HLHS

Comments:
I hope that more websites about HLHS are created. I think that more attention needs to be drawn to this illness. When Isiah was sick, it was a time of pain and confusion for my family because we were very unfamiliar with the illness and the surgical procedures that went along with it. Isiah's mother ch se the 3-part surgical option for him, but unfortunately Isiah passed away 2 weeks after his first birthday. I have now chose to dedicate my career to helping children with HLHS and their families to live their lives to the fullest. If anyone reading th s has any information about volunteer services in the New York City area that contribute to research involving HLHS, I would greatly appreciate the infromation. I wish Joshua the best of luck and health and he is in my prayers. God bless.

Paul Barnard - 02/01/00 03:10:42
My Email:usanuk@aol.com
Home State - Country:: Texas
Child(s) Name - Birthdate: Eric Franks
Heart Defect(s): HLHS

Comments:
Eric is my 2 day old nephew. Eric will start 3 stage surgery on his fifth day in this world. Your story gives us a great deal of hope. Thank you for posting Joshua's story on the web.

nichole powers - 01/31/00 21:34:03
Home State - Country:: california
Child(s) Name - Birthdate: nathan 6/18/98
Heart Defect(s): none

Comments:


Phil LaCasse Jr. - 01/28/00 20:17:36
My Email:placasse@snet.net
Home State - Country:: USA
Child(s) Name - Birthdate: Tyler LaCasse/ June 2000
Heart Defect(s): HLHS

Comments:
I am currently going through a pregnancy with my girlfriend, in which one of our unborn twin sons has been diagnosed with this condition. 24 hours ago I had absolutely no idea what this defect was all about, and I have never been so scared in my life. Tod y I move forward and attempt to educate myself as much as possible to see my son through and fight this battle by his side. The story of Joshua has inspired me to move forward, and reassures me that this is a fight that can be one. I can only now just say a prayer and go through this struggle together. Thank you all for your support. Best wishes, Phil LaCasse

Lori Freckelton - 01/28/00 02:34:02
My Email:freckeltons@yahoo.com
Home State - Country:: Michigan

Comments:
I am working with a special education boy who is 6 years old and has HLHS. I was looking for more info. When I came across your site. Kris is a special boy who has medical and emotional needs. I hope your special boy will thrive and enjoy life fully.

Nadeem - 01/27/00 20:20:04
My Email:bokharina@student.michener.on.ca
Home State - Country:: canada

Comments:


Lynn Briley - 01/25/00 21:03:08
My Email:nccajun@interpath.com
Home State - Country:: Buxton, North Carolina,USA
Child(s) Name - Birthdate: Victoria Lynn Stelly-10-1-97
Heart Defect(s): Hypoplastic Left Heart Syndrome
Hospital - Surgeon:: Children's Hospital of the Kings Daughters-Norfolk, Va.
Surgery Name(s) - Date(s):: Heart Transplant-10-12-97

Comments:
Our granddaughter Victoria had a heart transplant and died soon after due to complications, capillary leak syndrome. She went on a transplant list shortly after being born and miracously received a heart two days after being on the list. We were blessed t have her with us for 28 days. We did not know prior to her birth that she had any problems. We are very happy for your family that your little boy is doing so well. We will keep him in our thoughts and prayers. The Briley's

Laura Sims - 01/24/00 21:10:58
My Email:dixiebutterfly69@hotmail.com
Home State - Country:: Lauisiana

Comments:
i am a 14 year old that is doing a resherch project for health and i am very amazed at this story and am very happy for you that your son survied it. i will be sure to use your page to presnt to the class. it is a mericle that we have doctors like that. it is so horible that you had to go through that but it just makes us stronger and more aware of the stuff we take for granut. thankyou for this wonderfull page and the things i have learnd ans what my classmates will learn from it

Jana Burk - 01/24/00 05:46:46
My Email:burkdaug@premier1.net
Home State - Country:: Washington State
Child(s) Name - Birthdate: Riley 5/29/94
Heart Defect(s): hypoplastic right heart
Hospital - Surgeon:: Children's Hospital, Seattle - Dr. Mark Lupinetti
Surgery Name(s) - Date(s):: Norwood Procedure

Comments:
My son is doing well. It's nice to read about other people's experiences.

Anurag Dube - 01/23/00 05:01:02
My Email:milltd@satyam.net.in
Home State - Country:: Rajasthan, INDIA
Child(s) Name - Birthdate: 3-01-2000
Heart Defect(s): HLHS
Hospital - Surgeon:: Private Hospital
Surgery Name(s) - Date(s):: not yet done

Comments:
Thanks for the valuable information

Michelle Kaufer - 01/21/00 06:31:39
My Email:MLKAUFER@aol.com
Home State - Country:: NY, NY
Child(s) Name - Birthdate: Carin Alexis

Comments:
My friend's baby Carin was born 2 weeks ago today. She was immediately diagnosed with hypoplastic left heart syndrome. Her parents have also chosen the 3-stage process. I only hope it goes as well for them as it has for you and yours. Your website is insp ring and I will be passing it on to my dear friend.

Debby Z - 01/18/00 18:49:24
Home State - Country:: California

Comments:
A friend's, friend has a son that just had the 1st surgery and he is home and doing well.. Thank you for this site.. With God and the miracle of a child there is ALWAYS hope... all things work for good for those that love the Lord.. God's rich blessings t your family and the other families that share this syndrome...

michele - 01/17/00 02:20:44
My Email:chelesievr@aol.com
Home State - Country:: iowa
Child(s) Name - Birthdate: joshua 3years
Heart Defect(s): none

Comments:
we like you have a miracle named joshua! i always try to remind myself just how blessed we are to have such a happy, healthy child. after reading your story of joshuas challenges so early in life, i viewed the pictures you have on your site--what a bea tiful son you have! i will now always have a picture of him in mind and keep his health in my prayers as i continue to pray for the health of my own joshua! God bless and thank you for sharing your story.

jayne houk - 01/16/00 20:24:40
My Email:jayneh@GSCCC.COM
Home State - Country:: VIRGINIA
Child(s) Name - Birthdate: AUDREY BROOKE SHORT
Heart Defect(s): SAME AS JOSHUA'S
Hospital - Surgeon:: SHARPE/ SAN DIEGO CA

Comments:
our granddaughter was born too early nothing could be done for her in 1993 her vessels were too small she lived 10 days "The Best and Worst Days of our lives." I am happy for Joshua and your family Praise God!

peter campbell - 01/10/00 13:08:04
My Email:pncamp@senet.com
Home State - Country:: adelaide australia
Child(s) Name - Birthdate: 16 OCT 1992KURTIS
Heart Defect(s): HPLS
Hospital - Surgeon:: toronto sick kids
Surgery Name(s) - Date(s):: none

Comments:
our son (also our 1st child)was alao born with hplhs and unfortunately died aged 8 days we still miss him dearly and wish daily that we could have him back.Although we feel very jealous of you we feel more cheated that we to were not offered the opportun ty of surgery despite having asked many canadian surgens at the time.time has passed slowly and the wounds will probably never heal but with the help of our three other children we are learning to love (not a mistake)with the pain.

peter campbell - 01/10/00 12:48:36
My Email:pncamp@senet.com
Home State - Country:: adelaide australia
Child(s) Name - Birthdate: 16 OCT 1992KURTIS
Heart Defect(s): HPLS
Hospital - Surgeon:: toronto sick kids
Surgery Name(s) - Date(s):: none

Comments:
our son (also our 1st child)was alao born with hplhs and unfortunately died aged 8 days we still miss him dearly and wish daily that we could have him back.Although we feel very jealous of you we feel more cheated that we to were not offered the opportun ty of surgery despite having asked many canadian surgens at the time.time has passed slowly and the wounds will probably never heal but with the help of our three other children we are learning to love (not a mistake)with the pain.

- 01/09/00 03:00:17

Comments:


Tracy Carothers - 01/09/00 01:03:19
My Email:bjctlc@n-link.com
Home State - Country:: Texas
Child(s) Name - Birthdate: Samuel Henson 1-2-00
Heart Defect(s): hypoplastic left heart syndrome
Hospital - Surgeon:: Austin Children's Hospital Dr. Rowe
Surgery Name(s) - Date(s):: 1-6-00

Comments:
Samuel is my nephew. I was wanting to know what type of physical limitations are involved. Thanks

Janice Sroczynski - 01/07/00 22:26:49
My Email:jms@oakland-info.com
Child(s) Name - Birthdate: Nathan-Jan. 4,2000
Heart Defect(s): HLHS
Hospital - Surgeon:: U of M

Comments:
My nephew Nathan was born this past Monday and the family found out on Tuesday that he had HLHS. The doctors immediatly sent him to U of M to begin treatment and prep him for his first surgery. I got on the net to try to find out more about this syndrom for the family and came across your sight. I have to say, tears came to my eyes as I continued to read and feel a real sense of hope!!! Please give Joshua a hug for all of us!!! I am a preschool teacher myself and am glad to hear that he is able to att nd and enjoy all the things a four-year-old-boy should! Thank you for sharing your story, it really made my day and I know for a fact it will bring tears and smiles to the rest of the family!!! Love, Janice Sroczynski, MI

Rebecca Graham - 01/07/00 03:15:18
My Email:rgibsong@neo.rr.com
Home State - Country:: Ohio, USA

Comments:
I am an Early Intervention Specialist and met a beautiful little 7 month old Brittany today who was diagnosed with this syndrome during her 20th week of gestation. She has done well after her second surgery and we are going to evaluate her infant develop ental status. Her mother would greetly appreciate any information or support from another family "wearing the same shoes" Thank you. Becky- Portage County Bd. of MR/DD in Ohio.

Kurt Stigelman - 01/05/00 05:41:19
My Email:kwplace@freewwweb.com
Home State - Country:: MA
Child(s) Name - Birthdate: Angalica-3/24/98
Heart Defect(s): HLHS-PreDiagnosed
Hospital - Surgeon:: Childrens Hospital, Boston Dr. John Mayer
Surgery Name(s) - Date(s):: HLHS-Stage 2

Comments:
Just a "best-wishes" to you and your family. Our Loss takes us to a place I hope your family never has to go to. A friend in the battle against HLHS- Kurt

Kathy Gonyer - 01/05/00 00:02:52
My Email:kgonyer@avxtantalum.com
Home State - Country:: Maine
Child(s) Name - Birthdate: Rebecca Gonyer
Heart Defect(s): hlhs
Hospital - Surgeon:: Maine Medical -Quinn
Surgery Name(s) - Date(s):: Norwood Procedure 11-12-99

Comments:
Rebecca was also 6 weeks early and had a low birth weight of 4 lbs.She was delivered by an emergency c-section on 11-10-99 and had the Norwood Procedure on 11-12-99. After a valiant effort by the doctors and nurses Rebecca died on 11-18-99.She was my gran daughter and although we only had her with us for 8 days she will be missed so much.

RICK SPARKS - 01/01/00 04:04:36
My Email:RCS110160@YAHOO.COM
Home State - Country:: OHIO u.s.
Child(s) Name - Birthdate: RICK Y JR 08/23/83
Heart Defect(s): HLHS
Hospital - Surgeon:: CHILDRENS HOSPITAL OF MICH/ DR. ARSANAEGA
Surgery Name(s) - Date(s):: ALL 3

Comments:
OUR SON IS NOW 16 YEARS OLD AND DOING WELL. HE RECENTLY HAD TO GO TO PITTSBURG'S CHILDREN HOSPITAL FOR IRREGULAR HEART BEAT. HE GOES FOR A CHECK UP ABOUT EVERY 6 MONTHS. HE STILL IS ON LOTS OF MEDICATIONS FOR HIS HEART. HE IS SMALL FOR HIS AGE BUT IS BIG IN STATURE AND PERSONALITY HE WAS THE FIRST SURVIVOR OF THE NORWOOD PROCEDURE AT DETROITS CHILDREN'S HOSPITAL. transplant was not an option for us. we live about and hour from pittsburg in ohio, he is in the 9th grade and is loved by schoolmates and teachers (everyone) even though e is not out of the woods yet we feel he has been through so much that he will face whatever life deals to him and meet the challenge. it was all so scary to us back then in 1983 we knew nothing of HLHS but now through modern medicine and the information highway you can communicate with people and relate to their situations and help by sharing stories and prayer. (k ep the faith)

Lenore Cameron - 12/31/99 00:50:02
My URL:http://hometown.aol.com/lenore1231/myhomepage/index.html
My Email:LTTLHEARTS@aol.com
Home State - Country:: Connecticut
Child(s) Name - Birthdate: Jeffrey June 6, 1996
Heart Defect(s): HLHS
Hospital - Surgeon:: Boston, Dr. Richard Jonas
Surgery Name(s) - Date(s):: Norwood 6/24/96 Glenn 1/23/97
Picture Link or Favorite Heart Site: http://www.adventureangling.com/chd/hope.htm

Comments:
Visit the above websites if you'd like to see a picture of 39 kids with HLHS -- ranging in age from 2 months old to 10 years old. This picture was taken on 5/24/99 at Little Heart's annual get together. We call it the picture of HOPE. Enjoy.

Marian Warner - 12/29/99 04:03:25
My Email:marian1@optusnet.com.au
Home State - Country:: Australia
Child(s) Name - Birthdate: Paul - 18/10/82
Heart Defect(s): HPLH
Hospital - Surgeon:: Royal Womens Hospital - Paddington

Comments:
Thank you It is great to know that these babies can be saved. When Paul was born there was no treatment. so we just had to wait till the end. You are right about it probably being linked to some kind of global effect as around the time I had Paul many babies were born with missing organs I hope your son lives a long happy and healthy life. Regards Marian

Pam Williams - 12/26/99 18:51:27
My Email:Pjwilliams32381@aol.com
Home State - Country:: GA
Child(s) Name - Birthdate: Micheal "Hunter" Williams dob 12-17-99
Heart Defect(s): hypoplastic left heart syndrome
Hospital - Surgeon:: Egleston @ Emory Univ
Surgery Name(s) - Date(s):: Dr Kanter 12-22-99

Comments:
This is my son and his wifes first child our only grandchild. He seemed to be fine at birth and then around 24 hours after birth he developed some breathing complications and then it just continued to worsen. He came thru the first series of the norwood p ocedure good he is still in cicu, today is his 5th day since surgery and they closed his little chest up today and he still appears to be doing good. If you could would you please start a prayer chain for him.I pray that your little miracle baby boy conti ues to do good May God continue to Richly Bless You and Your Family

Paul Smith - 12/23/99 19:54:57
My Email:pnginlb@aol.com
Home State - Country:: California
Child(s) Name - Birthdate: Philip
Heart Defect(s): HLH
Hospital - Surgeon:: Dr. Starnes
Surgery Name(s) - Date(s):: Norwood

Comments:
I enjoyed reading your story. We've made it thru one tough hurdle. Our little guy had his first surgery this week, and is still in ICU. I hope we have as much luck as you have had. I hope all is well with your son. Take care.

Lisa A. Lynn - 12/23/99 14:20:16
My URL:http://web2.murraystate.edu/llynn/csc299-01/joshua.htm
My Email:darylsandlisal@aol.com
Home State - Country:: Kentucky, U.S.A.
Child(s) Name - Birthdate: Joshua Spencer-May 26,1999
Heart Defect(s): HLHS
Hospital - Surgeon:: Kosair Children's Hospital-Dr. Austin
Surgery Name(s) - Date(s):: Norwood-May 28,1999, Glenn-October 11,1999
Picture Link or Favorite Heart Site: chdwebring

Comments:
That's a good name we picked out isn't it? I posted back in September and wanted to give everyone a chance to see Joshua at his new website. I hope your Joshua knows what great parents he has! Prayers work wonders don't they? God Bless all chd families!

Susan - 12/23/99 05:08:23
My Email:Neylan4@aol.com
Home State - Country:: Delaware

Comments:
Great Story!!!

Belinda G. Martin - 12/21/99 22:27:50
My Email:beebea_1998@yahoo.com
Home State - Country:: La.
Child(s) Name - Birthdate: Shellie Lynn Gunnell
Heart Defect(s): Only 2 Valves
Hospital - Surgeon:: Bogalusa, Med Center
Surgery Name(s) - Date(s):: None - Died/
Picture Link or Favorite Heart Site: N/A/

Comments:
THe only comment I have is I wish that I knew that she had this wrong while carring her. My doctors did not find it. They did no test on her except Ultrasounds and that could not find anything wrong. She only lived 10 days.

Belinda G. Martin - 12/21/99 22:25:45
My Email:beebea_1998@yahoo.com
Home State - Country:: La.
Child(s) Name - Birthdate: Shellie Lynn Gunnell
Heart Defect(s): Only 2 Valves
Hospital - Surgeon:: Bogalusa, Med Center
Surgery Name(s) - Date(s):: None - Died/
Picture Link or Favorite Heart Site: N/A/

Comments:
THe only comment I have is I wish that I knew that she had this wrong while carring her. My doctors did not find it. They did no test on her except Ultrasounds and that could not find anything wrong. She only lived 10 days.

Marea Ovebey - 12/21/99 05:07:05
My Email:MareaO@msn.com
Home State - Country:: USA
Child(s) Name - Birthdate: William 11-17-99
Heart Defect(s): HLHS
Hospital - Surgeon:: Ronald Elkins MD @ Childrens Hospital OKC,OK
Surgery Name(s) - Date(s):: Norwood 11-22-99

Comments:
I had no idea there were so many wonderful websites out there about this condition. We are all so blessed to have our children and the doctors who have helped them to live. My William is doing wonderful and I know he will continue to do so.

judith johnson - 12/20/99 19:36:15
My Email:johnsoja@etsu.edu
Home State - Country:: Tenn. USA
Heart Defect(s): HLHS

Comments:


Tom Sherill - 12/20/99 01:17:35
My Email:rtsj01@infoave.net
Home State - Country:: Pelion, Sc
Child(s) Name - Birthdate: Gabriel James Cochran
Heart Defect(s): HLHS
Hospital - Surgeon:: Emory

Comments:
Grandson born Friday 12/17/99 CICU Emory Chrildrens Hospital, Atlanta , GA your site give hope.

Amee Gates - 12/17/99 19:11:44
Home State - Country:: Colorado
Child(s) Name - Birthdate: Joshua David Gates 11/4/99 died 11/29/99
Heart Defect(s): HLHS
Hospital - Surgeon:: Memorial Hospital

Comments:


Arnhild and Hċvard Grimstad - 12/16/99 14:36:11
Home State - Country:: Norway
Child(s) Name - Birthdate: Gustav 17.11.93
Heart Defect(s): HLHS
Hospital - Surgeon:: Childrens Hospital of Philadephia - Dr. William I. Norwood
Surgery Name(s) - Date(s):: Stage 1 28.11.93, USA. Stage 218.08.94 Clinique DeGenolier Switzerland(Dr.Norwood moved his clinic) Stage 3 16.02.95, also in switzerland.

Comments:
I am very happy that Joshua is doing so well. Gustav is 6 years old now, and his heart is perfect. We also have a girl Ingrid,who is healty. She will be 3 years old in march . In april 2000 we are expecting our child nr. 3, and the baby seems to be healty too.In august Gustav is starting at school, so it`s going to be an exciting year for us.Wish you all the best! Love from Arnhild.

Richard Wilkinson II - 12/15/99 19:19:17
My Email:booboo_rdw@yahoo.com
Home State - Country:: Arkansas/ USA
Child(s) Name - Birthdate: Ian Paul Wilkinson Jan 2000
Heart Defect(s): Hypoplastic left heart
Hospital - Surgeon:: St. Louis children's hospital
Surgery Name(s) - Date(s):: ?????
Picture Link or Favorite Heart Site: This one.

Comments:
My son Ian will be born in Jan. 2000. I felt so much pain when i found out my son has HLHS. I hope and pray his 3 surgerys go well.

Richard Wilkinson II - 12/15/99 19:15:41
My Email:booboo_rdw@yahoo.com
Home State - Country:: Arkansas/ USA

Comments:


david smith - 12/15/99 04:09:40
Home State - Country:: mi.usa
Child(s) Name - Birthdate: alexandria 9-25-93
Heart Defect(s): hlhs
Hospital - Surgeon:: hakimi
Surgery Name(s) - Date(s):: all three

Comments:
congratulations I will pray for all.

FRANKLIN G. MONK JR. - 12/10/99 22:49:49
My Email:MONK.81OLDS@JUNO.COM
Home State - Country:: CHESAPEAKE,VA
Child(s) Name - Birthdate: KAYLA N. MONK 12-3-99
Heart Defect(s): HLHS
Hospital - Surgeon:: CHIRLDREN HOSPITAL OF PHILADELPHIA. DR. KARL
Surgery Name(s) - Date(s):: NORWOOD PROC. STAGE 1 12-10-99
Picture Link or Favorite Heart Site: WWW.GEOCITIES.COM

Comments:
THE INFORMATION ABOUT YOUR SON HAS HELP ME AND GIVING ME HOPE ABOUT MY DAUGHTERS OPERATION. I THINK GOD EVERTHING WENT WELL TODAY ON HER FIRST OPERATION. FRANKLIN MONK

judith upton, rn - 12/01/99 01:25:58
My Email:upton97@bright.net

Comments:


martha DeBiasi - 11/30/99 23:37:27
My Email:mdebiasi@us.ibm.com
Home State - Country:: hickory,nc

Comments:
thank you for your personal story. I am blessed with a healthy teen age boy, but you story touched my heart. My son is using some of your story as part of a biology project he has on the heart. YOu put a personal face on this disease that really helped im understand it. Nothing in the world is better than a healthy childl Good luck to all of you.

- 11/29/99 13:44:51

Comments:
i have a friend that their child has a hypoplastic heart and after reading your story i feel confident that their little michael will be fine he will be having his sx december 1st at childrens' hospital detroit

lynn lusk - 11/29/99 13:41:25

Comments:


Maarten Lecompte - 11/26/99 15:10:42
My Email:mlecompte@ou.ua.ac.be
Home State - Country:: Belgium
Child(s) Name - Birthdate: Judith-19/10/99
Heart Defect(s): HLHS
Hospital - Surgeon:: Univerity Hospital of Ghent
Surgery Name(s) - Date(s):: dr. Francois

Comments:
I was very glad to find this site. Our daughter Judith (born 19/10/97) was diagnosed HLHS at three months (!) old. 5 days later she had her first surgery (shunt). The second surgery was done in december 1998. She is doing very well now. She is so active t at we sometimes forget she has a severe heartdisease.The cardiologist wants to wait for the fontan-operation until she is three. Our second child, Nathan, is two months now and a healty boy. We thanks the Lord, our God, for the wonders he had done!

George Lawston - 11/24/99 05:16:22
My Email:glawston@hotmail.com
Home State - Country:: North Miami Beach, Florida
Child(s) Name - Birthdate: Natalie Janice Lawston
Heart Defect(s): H.P.L.H.S.
Hospital - Surgeon:: Miami Childrens Hospital
Surgery Name(s) - Date(s):: Norwood procedure june 7th 99

Comments:
My wife and Me are getting Natalies story together soon we will post it for everyone. I read you story back in june, i could not hold the tears in my eyes, Because i was going tru the same situation. in that time i even tried to get in touch with Dr. Ed Bove. and i was unsuccesful. but i was able to speak with Dr.Mosca. Today Natalie is doing great. she just got her Cath done Yesterday Nov 22/99. The Doctors said that she is ready. But we are going to wait till January to be able to Donate Blood for her Fontan Operation. May the Lord, Bless you all. George Lawston

George Lawston - 11/24/99 05:10:57
My Email:glawston@hotmail.com
Home State - Country:: North Miami Beach, Florida
Child(s) Name - Birthdate: Natalie Janice Lawston
Heart Defect(s): H.P.L.H.S.
Hospital - Surgeon:: Miami Childrens Hospital
Surgery Name(s) - Date(s):: Norwood procedure june 7th 99

Comments:
My wife and Me are getting Natalies story together soon we will post it for everyone. I read you story in june, i could not hold the tears in my eyes, Because i was going tru the same situation. Today Natalie is doing great. she just got her Cath done Yesterday Nov 22/99. The Doctors said that she is ready. But we are going to wait till January to be able to Donate Blood for her Fontan Operation. May the Lord, Bless you all. George Lawston

- 11/21/99 06:27:57

Comments:


- 11/20/99 23:54:02

Comments:


Sheri Sanders - 11/19/99 15:43:02
My Email:MSTS@webtv.net
Home State - Country:: The Colony, TX USA
Child(s) Name - Birthdate: Trevor Sanders 9-18-96
Heart Defect(s): Unbalanced Av Canal HLV DORV CoA PS and Leaky Av Vavle NO mitral valve
Hospital - Surgeon:: Children's Medical Center in DAllas Dr. Nikaidoh and U of M by Dr. Bove
Surgery Name(s) - Date(s):: PA Banding,9-20-96, Glenn and Patch enlargement on PA 12-22-96 DKS and Bt Shunt (lft side) 5-33-97 and Hemi fontan and valve repair and patch enlargement on Pa (again) 10-19-99

Comments:
Dr. Bove is wonderful wish we had know about him when Trevor was born..... Sheri Sanders

Sheri Sanders - 11/19/99 15:10:33
My Email:MSTS@webtv.net
Home State - Country:: The Colony, TX USA
Child(s) Name - Birthdate: Trevor Sanders 9-18-96
Heart Defect(s): Unbalanced Av Canal HLV DORV CoA PS and Leaky Av Vavle NO mitral valve
Hospital - Surgeon:: Children's Medical Center in DAllas Dr. Nikaidoh and U of M by Dr. Bove
Surgery Name(s) - Date(s):: PA Banding,9-20-96, Glenn and Patch enlargement on PA 12-22-96 DKS and Bt Shunt (lft side) 5-33-97 and Hemi fontan and valve repair and patch enlargement on Pa (again) 10-19-99

Comments:
Dr. Bove is wonderful wish we had know about him when Trevor was born..... Sheri Sanders

Angela Giammarresi - 11/16/99 16:53:16
My Email:www.bettyboop@innerwise.com
Home State - Country:: U.S.A

Comments:
I am happy to bhear everything is going well for Joshua. I am a pediatric surgical heart unit nurse at Christ Hospital in Oak Lawn Illinois. I take care odf many children with congenital heart defect as includin HLHS. It is nice to hear that Joshua is do ng well. My prayers for Joshua and yyour family for continued health and happiness.

debi &jeff harriman - 11/15/99 22:00:32
My Email:harrimangoff@cybertous
Home State - Country:: lyman, maine
Child(s) Name - Birthdate: rebecca gonyer 11/10\99
Heart Defect(s): hplhs
Hospital - Surgeon:: mmc\dr.quinn
Surgery Name(s) - Date(s):: norwood pro. 11/12/99

Comments:
Rebecca Anne Gonyer came to us 5 weeks premature Her mom, Bobbi-jo spent 2 weeks bedridden before Rebecca was born. The doctors told the 2 of them that there was something darstically wrong with that there was something drastically wrong with Rebeccas

debi &jeff harriman - 11/15/99 21:52:42

Comments:


STEVIE MELLOR - 11/11/99 03:25:25
My Email:smellor46@hotmail.co
Home State - Country:: KANSAS
Child(s) Name - Birthdate: Max Romero -EDC- 3/00
Heart Defect(s): HYPOPLASTIC L.HEART

Comments:
MY DAUGHTER IS 22 WEEKS GESTATION WITH FRATERNAL TWINS. We LEARNED TODAY THAT HER SON HAS HYPOPLASTIC LEFT HEART. THE PEDS. CARDIOLOGIST IS NOT VERY OPTOMISTIC RE' OUTCOME. SHE will be consulting with a Peds cardiac surgeon in Kansas City to evaluate fe sibility of the Norwood procedure after the twins are delivered.At this point birth weight will be the critical indicator for surgery. We are devastated. Your story will hopefully ,help us to maintain hope that God will grant us a miracle & allow us to eep this miracle baby.Thank you for sharing your miracle. Please remember us in your prayers.smellor46@hotmail.com

Gloria King - 11/10/99 20:31:51
My Email:Gloria_King_2000@yahoo.com
Home State - Country:: Mississippi
Child(s) Name - Birthdate: Wendell King 4/04/9889
Heart Defect(s): HLHS
Hospital - Surgeon:: U of M Dr. Bove
Surgery Name(s) - Date(s):: Norwood 3/13/98 Hemi Fontan 9/98

Comments:
We are very nervous about the final stage coming up at least me and my husband are I dont think any the could bother this 20 month old little boys' spirits a happy baby ever day of the week. I is stories like this that keep us going. May God continue to less your family.

Gloria King - 11/10/99 19:54:20
My Email:Gloria_King_2000@yahoo.com
Home State - Country:: Mississippi
Child(s) Name - Birthdate: Wendell King 4/04/9889
Heart Defect(s): HLHS
Hospital - Surgeon:: U of M Dr. Bove
Surgery Name(s) - Date(s):: Norwood 3/13/98 Hemi Fontan 9/9812

Comments:
We are very nervous about the final stage coming up at least me and my husband are I dont think any the could bother this 20 month old little boy's spirits a happy baby ever day of the week.

Angelique - 11/09/99 05:33:31
My URL:http://www.oocities.org/Heartland/River/7124
My Email:angel_leek@yahoo.com
Home State - Country:: Indiana - USA
Child(s) Name - Birthdate: Charles Nickolas - 9/4/99 to 9/7/99
Heart Defect(s): HLHS
Hospital - Surgeon:: Wishard Hospital

Comments:
I didn't find out my son had HLHS until the autopsy came back. He sure was a little fighter though. Nicky was 9lb 6oz at birth and lokked to be a healthy baby. I questioned his eating but was told some babies need to be force fed to learn how to eat. ow I wish I would have pushed the issue harder so that maybe Nicky's condition could have been diagnosed before we left the hospital. Researching the survival rates on HLHS is great and devastating at the same time because my Nicky didn't get the chance hat he should have. God Bless Joshua and I hope he has a long and productive life ahead of him.

Siri J Solberg Dalehaug - 11/08/99 14:30:24
My Email:sjsolb@manpower.no
Home State - Country:: Norway
Child(s) Name - Birthdate: Maria Solberg Dalehaug, date of birth 18.04.99
Heart Defect(s): Hypoplastic left heart syndrom
Hospital - Surgeon:: Rikshospitalet in Oslo, Norway
Surgery Name(s) - Date(s):: Dr. Seem and Dr. Lindberg - Date of surgury the 21th of april 1999

Comments:
I thankYou so much for letting us read your story. I am very glad to hear that your son lives after having been through 3 very difficult levels of surgury. Me and my husband gave birth to a beautiful little girl the 18th of april this year. She was the lo eliest little girl with much dark brown hair. The day after she was born we realised she was born with the hypoplastic left heart syndrom. We experienced the most difficult days of our lives. Maria went through level 1 of surgury. She was a strong little irl, who really faught for her life. We learned alot about the hearts functions and how it was going to bee rebuild, so that she could go on living. Maria died after nine days in the arms of a nurse. Unfortunately we were not at the "intensive department" at the moment, but at least we got to hold her as much as we wanted afterwards. We put on her clothes took pictures and gave her lots of kisses. I love my daugther and so do my husband. Maria was our first child, we will always love her with all our heart till the day we die. Regards from Maria`s mum, Siri

Don Sabell - 11/06/99 17:24:30
My Email:dpsabell@aol.com
Home State - Country:: Taylor, MI
Child(s) Name - Birthdate: Samantha 10/09/1999
Heart Defect(s): HLHS
Hospital - Surgeon:: Childrens Hospital of Michigan
Surgery Name(s) - Date(s):: Norwood - 10/13/1999

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Aziz Stephan - 11/06/99 12:26:08
My Email:astephan@nesma.net.sa
Home State - Country:: Saudi Arabia
Child(s) Name - Birthdate: Nicole 10/28/99
Heart Defect(s): HLHS
Hospital - Surgeon:: Al-Mani

Comments:
My friend Naim had a daughter one week ago. She was diagnosed yesterday with HLHS. She is right now in the intensive care unit awaiting surgery. I read Joshua's story and I thank God for his successfull surgery. The 3 options the you mention in your story were given to my friend who wants to go ahead with surgery in a local specialized hospital. I have printed your article to show it to my friend which I think would be encouraging for him and his wife. I would like to know if possible how much would the cost be for the whole operation in the same hospital that Joshua went to and how easy it would be to schedule such an oper ion as you have mentioned that it must be done within the first month. Best Reagrds Aziz Stephan

Melanie Gilbert - 11/03/99 00:25:30
Home State - Country:: Canada

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Josh and Ruth Burton - 11/01/99 05:23:33
My Email:jrburton@i-55.com
Home State - Country:: Louisiana
Child(s) Name - Birthdate: Matthew - 9-17-99
Heart Defect(s): Hypoplastic Left Heart Syndrome
Hospital - Surgeon:: DuPont Hospital - Dr. Norwood
Surgery Name(s) - Date(s):: Norwood on 9-29-99

Comments:
Matt was diagnosed with HLHC 10 days after he was born. We had no clue prior that there was any problem. Fortunately, our pediatric cardiologist, Dr. Hixon, is friends with the pediatric cardiologist at DuPont Hospital and immediately knew what to do. att arrived in Deleware just 12 hours after being diagnosed and had surgery the next day. We have been home for about 3 weeks now, and so far so good. I pray he recovers from the next 2 surgeries as well as he has from his first!

judy melson - 10/30/99 03:41:50
My Email:judy melson@aol.com
Home State - Country:: jacksonville, florida
Child(s) Name - Birthdate: barrett winder 6-2-99
Heart Defect(s): hypoplasticleft heart
Hospital - Surgeon:: Dr Gary Haas
Surgery Name(s) - Date(s):: norwood 6-18-99

Comments:
I am Barrets grandmother. Today she looks and seems to feel like a normal healthy 5 month old. Her Second surgery has not yet been set as she is dong so well. I thank GOD every day that my dauther choose to elect the surgeries that would save her life. As you know it is a very difficult time. I am so glad your son is doing so well and pray Barrett does also.

keri carpenter - 10/28/99 18:17:09
My Email:tugolini40@hotmail.com
Home State - Country:: Illinois-USA
Child(s) Name - Birthdate: Faith 11/20/97-11/26/97
Heart Defect(s): Hypoplastic Left Heart Syndrome
Hospital - Surgeon:: Morris
Surgery Name(s) - Date(s):: none

Comments:
Unfortunately,our baby Faith was not given any such opportunity,as it was not ever diagnosed even though every sign and symptom of HLHS was there. We are parents and family who wish on the highest star that she would have been given the chance at life or hat we would have been given the chance to make that decision for her.We rejoice in your success story and praise God for your miracle. We also have a miracle baby #1 at home with us and we cannot thank the Lord enough for him. Faith lived to be six days ld. She passed on Thanksgiving day of 1997. If we only would have known. How we wish we could have comforted her. Reading these incredible amazing success stories breaks my heart in a way no one could possibly understand unless they have been through the rauma of losing a little lamb,so innocent,so precious. It is as though some people measure the hurt of the loss with the size.But I also can rejoice with these miracle babies and their families for there is nothing better than beating the odds-overcoming eath is a great feat and these precious souls are such fighters. Please do not take my comment to be negetive toward the survivers for it is a personal feeling that will always be there only because our baby did not even have a chance due to the poor care she was in during and post pregnancy.My husband and I-our hearts go out to all that have lost a baby and rejoice for those who have beaten all odds. Our heartfelt love to all who have experienced the trauma of this disease.

keri carpenter - 10/28/99 17:39:49
My Email:tugolini40@hotmail.com
Home State - Country:: Illinois-USA
Child(s) Name - Birthdate: Faith 11/20/97-11/26/97
Heart Defect(s): Hypoplastic Left Heart Syndrome
Hospital - Surgeon:: none
Surgery Name(s) - Date(s):: none
Picture Link or Favorite Heart Site: just beginning research

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Leslie Schultea - 10/27/99 02:24:55
My Email:dschultea@ev1.net
Home State - Country:: Houston, Tx.
Child(s) Name - Birthdate: Grace Born/Deceased 11-20-98
Heart Defect(s): HLHS/other complications
Hospital - Surgeon:: Texas Children's
Surgery Name(s) - Date(s):: N/A

Comments:
Grace was born 11-20-98 at almost six months gestation. She was still born and the whole ordeal was a whirlwind for us. We have been trying to get pregnant since March with no success and just found out that my hormones are still very confused and my bo y thinks that I am still pregnant and thus will not allow me to get pregnant again. We are currently trying to fix these hormone problems and are hoping to be pregnant soon. I really enjoy hearing from other HLHS families and have received great support from those who have e-mailed me through the Left Heart Matters web site.

Kris Lilla - 10/26/99 20:24:44
My Email:cklilla@itctel.com
Home State - Country:: South Dakota
Child(s) Name - Birthdate: Seth 3/3/94
Heart Defect(s): HLHS

Comments:
Your story is wonderful! I also had a son born with hypo plastic left heart so I can really relate to the situation. We didn't have such a happy ending as my son only lived 5 weeks. I'm really happy to see the success rate is improving. You're fortunate to have your own miracle!

Trevor/Sheri Willette - 10/25/99 06:50:21
My Email:willette5@yahoo.com
Home State - Country:: CA -- USA
Child(s) Name - Birthdate: Kylee Ann 10/16/99
Heart Defect(s): HLHS
Hospital - Surgeon:: LomaLinda Univ Med Cntr
Surgery Name(s) - Date(s):: none

Comments:
Our Kylee Ann was only with us for a brief 8 hrs. Like so many of the others, we had no idea that anything was wrong. She was born at 6:51 P.M. She was held by everyone. She breastfed as if everything was fine. Her daddy took her 2 older sisters home t at evening. The nurse took her to the nursery to run the regular tests on her, when they discovered that she had HLHS. The news was devastating. Trevor came back to the hospital and we were given the 3 options. We decided that it would be best if God ook her. She died at 3 A.M. on October 17, 1999. We feel very blessed to have had her, if only for a brief time. God bless you Joshua. May you have long life. May God be with all of us who have had to go through this. We are planning to try again nex year. Hopefully things will go better this time. The Willettes

Pele - 10/23/99 22:01:40
My Email:pelelee@cableinet.co.uk
Home State - Country:: Gravesend, Kent. England
Child(s) Name - Birthdate: Harry Lee 02/June/98
Heart Defect(s): Hypoplastic Left Heart
Hospital - Surgeon:: Guys, London.
Surgery Name(s) - Date(s):: 1st stage
Picture Link or Favorite Heart Site: This one

Comments:
Hi, I wrote to you last year to tell you I was expecting a baby with HLHS, and your website helped us to understand. Unfortunately Harry died 3 later, just after surgery. I thought I'd never be able to pick my self up and keep going, but it is as someone sa d, "these things are to make us stronger people"We did pick ourselves up again, it took a while, and know just over a year later we are expecting our 2nd child. I've had tests, and this one willl be fine, but I don't want a baby to replace Harry, because it never will, I am scared because I worry that I won't love this baby, even though it is very much wanted, and hopefully will fill some of the great big hole that Harry left in our lives. "An Angel from Heaven too perfect for Earth"

Susan Weber - 10/23/99 16:47:40
My Email:hmslweber@mlode.com
Home State - Country:: California
Child(s) Name - Birthdate: Aiden Erik Weber born 9/28/99 Died 10/2/99
Heart Defect(s): hydroplastic left heart syndrom
Hospital - Surgeon:: U C San Francisco - Dr. Reddy
Surgery Name(s) - Date(s):: norwood surgery 9/30/99

Comments:
We knew Aiden would need heart surgery 6 weeks before his birth. The family traveled 3 1/2 hours to UCSF so he would be born where the very best could be done for him. He came out screaming and progressed better that any one had thought possible. He wa stabilized with a blood transfusion and surgery was performed at two days old. Doctors were amazed at how wonderful he was doing. Even up to minutes before his blood pressure dropped to nothing and his heart stopped he was doing great. The doctors and taff tried for forty minutes to revive him but couldn't. Our little Aiden has touched so many lives in his short time on earth. He was on so many prayer chains all over the U.S. and in so many churches. Even though we had him for such a short time, he wa a blessing. Aiden's heart is now being checked over to hopefully help some other child who might need surgery for the same heart problem. Because of Aiden's life, your child may be helped. I pray that you will get the best help for your child and seek he wonderful doctors that are out there. Don't be shy about asking for a second opinion because it is your child's life. No question is a stupid one. God is good! He gave us only four short days with Aiden, but his life will help others. In Him, Aiden s Grandmother

Kristina Šljuka - 10/21/99 12:16:39
My Email:kristinas_dbk@hotmail.com
Home State - Country:: Iva Vojnoviĉa 48. 20000 Dubrovnik / Croatia
Child(s) Name - Birthdate: Mateo/28.08.1999.
Heart Defect(s): hypoplastic heart
Hospital - Surgeon:: Dubrovnik

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Jennifer Grando Ting - 10/20/99 00:19:23
Home State - Country:: Pennsylvania

Comments:
I am a medical student at Penn State, Hershey Medical Center. Thank you for the information on your web site. I'm happy your son is so vibrant and healthy.

DAN VAN PELT - 10/18/99 21:33:22
Home State - Country:: NEBRASKA
Child(s) Name - Birthdate: DYLAN 5/4/99
Heart Defect(s): HLHS
Hospital - Surgeon:: DR KIM DUNCAN-OMAHA

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Ann Bowman - 10/18/99 21:16:43
My Email:abowman88@netzero.net
Home State - Country:: Illinois

Comments:
36 years ago my sister had open heart surgery at Presbyterian St. Lukes in Chicago. It to was a life saving procedure for her! God Bless You! I heard of your site through Joshua's teacher, Debbie Farrell, a good friend of mine.

Selina and Baby Richie - 10/18/99 17:47:25
My URL:http://sites.netscape.net/meem208/homepage
My Email:selinajimenez@hotmail.com
Home State - Country:: New Jersey U.S.A.
Child(s) Name - Birthdate: Richie 2/28/98
Heart Defect(s): HLHS
Hospital - Surgeon:: Deborah Heart and Lung Center Dr. Marshall Jacobs
Surgery Name(s) - Date(s):: Sepectomy 2/28/98 Norwood 3/3/98 Hemi-Fontan 8/10/98 Surgery to open where pulmonary vein goes into R atrium 1/11/99 Fontancoming in Jan. 2000

Comments:
What a wonderful and brave little boy! Much Love, Selina and Baby Richie 19 months HLHS

Lee Johnson - 10/14/99 01:21:20
My Email:toddnlee@bardstown.com
Home State - Country:: Bardstown, KY.
Child(s) Name - Birthdate: Ike- June 16, 1999
Heart Defect(s): HLHS
Hospital - Surgeon:: Kosair Children's
Surgery Name(s) - Date(s):: Austin, Yeh- Norwood 6/18/99
Picture Link or Favorite Heart Site: Joshua's Page

Comments:
My son had the Norwood in June. We are looking to have the second surgery in November. We are amazed each day by how well he is doing. Best hopes for all children with congenital heart defects.

Jennifer Martinez - 10/12/99 17:14:01
My Email:jenandluis@yahoo.com
Home State - Country:: Michigan
Child(s) Name - Birthdate: Erin 10/04/99
Heart Defect(s): HPLH
Hospital - Surgeon:: U of M Hospital
Surgery Name(s) - Date(s):: 10/14/99

Comments:
We almost lost Erin two days after she was born, no one had any idea there was anything wrong with her until then. Fortunatly for us a nurse realized what was wrong with her before it was to late. Her Norwood is scheduled for 10/14. It's very reassurin to know she's in good hands and that there are children out there who are living happy, normal lives despite being diagnosed with HPLH. Say a prayer for us on Thrsday.

Kirk Estee - 10/12/99 03:08:30
My Email:krestee@ne.uswest.net
Home State - Country:: omaha, nebraska
Child(s) Name - Birthdate: Madison (still inside mom)
Heart Defect(s): hlhs

Comments:
We found out today that our little unborn girl has hlhs. We are still shell-shocked. Our pediatric cardiologist said the Norwood was very risky. But so is waiting for a transplant. We are facing the toughest time of our lives, as many others have. W need to pray that God helps us make the right decisions.

Stacey Gann - 10/11/99 21:28:20
My Email:Stayce163@hotmail.com
Home State - Country:: Indiana
Child(s) Name - Birthdate: Jackson Gann(brother)7/27/99
Heart Defect(s): Multiple Congential Defects
Hospital - Surgeon:: University of Michigan, Dr. Bove

Comments:
Hello, It is a mircle on what they can do to newborns today! My half brother, Jackson, was born with multiple heart defects. All of his internal organs are on the wrong side of the body except for his heart. His arteries are connected in the wrong places and few other things are wrong, not sure what, but I will let you know. He was flown to the University of Michigan when he was a week old. The first surgery he had was to make his pulmory artery larger and put in a shunt to help the blood flow the the lung . Something didn't work after the first surgery so they had to do 2 more before things worked right. Jackson spent 5 weeks in the hospital and finally came home when he was 6 weeks old. Now he is doing well and will have to have 3 more surgeries to rep ir all of the heart damage. Stacey

Lisa - 10/09/99 00:34:44
My Email:MauckDJ@aol.com
Home State - Country:: Indiana
Child(s) Name - Birthdate: Ryan 10-9-1991
Heart Defect(s): Hypo-Plastic Left Heart
Hospital - Surgeon:: Kosairs
Surgery Name(s) - Date(s):: 10-17-99

Comments:
Ryan was diagnosed with HPLH 1 month before he was born. At 8 days old and weighing only 4lb. he had a heart transplant. 9 days later he died of a blood clot. Tomorrow would have been Ryan's 8th birthday. I now have 2 healthy and very active boys. Go is good. Good Luck to all of you.

lisa - 10/09/99 00:27:43

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Lisa Mauck - 10/09/99 00:14:16
My Email:MauckDJ@AOL.com
Home State - Country:: Indiana
Child(s) Name - Birthdate: Ryan 10-9-91
Heart Defect(s): Hypo-Plastic Left Heart
Hospital - Surgeon:: Kosair's

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Ryan Mauck - 10/09/99 00:11:02

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Holly Cromer - 10/06/99 12:18:05
My Email:hollyjo45@hotmail.com
Home State - Country:: MI USA

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Judy Straeffer - 10/05/99 17:29:33
My Email:jstime@erols.com
Home State - Country:: Massachusetts, USA

Comments:
Debbie Farrell, Joshua's preschool teacher, sent me your website address. I just read through Josh's history, and was pleased to see the U of M hospital spoken of so highly. We moved here to MA 2 years ago, after having lived in Ann Arbor, MI, for 7 yea s. It's a great town, has a great university, and a world reknowned university hospital. I'm glad your prayers were answered and the doctors did such good work.

Jeannie - 10/02/99 19:36:38
My Email:sjstaley@allwest.net
Home State - Country:: Wyoming
Child(s) Name - Birthdate: Carsen 9/10/99
Heart Defect(s): HLHS
Hospital - Surgeon:: Phoenix Childrens Hospital
Surgery Name(s) - Date(s):: Norwood Procedure 9/21/99

Comments:
Joshua's story is inspiring. We hope for Carsen to do well and make it thru the other 2 procedures. Hope all is well with Joshua.

greg & allison wert - 10/02/99 01:25:08
My URL:http://pages.prodigy.net/gwert/PI%20Personal%20Web%20Pages/
My Email:gwert@prodigy.net
Home State - Country:: Farmington Hills, MI
Child(s) Name - Birthdate: Jonathan, 9/16/99
Heart Defect(s): Hypoplastic LHS
Hospital - Surgeon:: NA
Surgery Name(s) - Date(s):: NA
Picture Link or Favorite Heart Site: NA

Comments:
Jonathan was born with HLHS and Hydrocephalus. Our cardiologist did not recommend the Norwood operations given his condition. We brought him home 4 days after birth. And now, 15 days later our miracle baby Jonathan is still with us. We wonder, is there anyone else with this combination of HLHS & Hydrocephalus? Did you have the Norwood operations? How did it go? We have received much support, but we have also received strange family/friend reactions. Some would insist that we have the operations, even if they thought he should have been terminated in the first place. We consider it a blessing to have known and ove him this long. We know that his days on this earth are limited, but we will be together as a family later.

greg & allison wert - 10/02/99 01:20:46
My URL:http://http://pages.prodigy.net/gwert/PI%20Personal%20Web%20Pages/
My Email:gwert@prodigy.net
Home State - Country:: Farmington Hills, MI
Child(s) Name - Birthdate: Jonathan, 9/16/99
Heart Defect(s): Hypoplastic LHS
Hospital - Surgeon:: NA
Surgery Name(s) - Date(s):: NA
Picture Link or Favorite Heart Site: NA

Comments:
Jonathan was born with HLHS and Hydrocephalus. Our cardiologist did not recommend the Norwood operations given his condition. We brought him home 4 days after birth. And now, 15 days later our miracle baby Jonathan is still with us. We wonder, is there anyone else with this combination of HLHS & Hydrocephalus? Did you have the Norwood operations? How did it go? We have received much support, but we have also received strange family/friend reactions. Some would insist that we have the operations, even if they thought he should have been terminated in the first place. We consider it a blessing to have known and ove him this long. We know that his days on this earth are limited, but we will be together as a family later.

Sharon Ginn - 10/01/99 14:26:12
My Email:sharon_ginn@bscc.bls.com
Home State - Country:: TN-US
Child(s) Name - Birthdate: Jonah Michael - due 12/16/99
Heart Defect(s): hypoplastic left heart syndrome
Hospital - Surgeon:: U of Michigan - Dr. Bove

Comments:
I read your story about a week ago. I am so happy that Joshua is doing well. I hope everything is still okay. My husband and I found out about a month ago that our little boy, Jonah Michael has hypoplastic left heart syndrome. He is due Dec. 16, 1999. We are planning on going to see Dr. Bove at the U of Michigan. We are a little anxious (obvioulsy) about the trip and what will follow. Hopefully we will get some infomation from Dr. Bove's office soon regarding the accomadations we will have once up there. We are very fortunate to already know about his condition because we are able to plan things. We have also had time to deal with the shock of the whole situation. I still have several days where I cry a lot. But I find comfort in knowing that whatever appens, God has His hand on Jonah and on us. I have always believed in the power of prayer and that God can and does perform miracles. We have been praying for a miracle! We are also fortunate to go to a church that is very supportive to us and faithful to God. Thank you for sharing your story with so many who need the encouragement. Please email me if you have time with any information about U of Michigan and the staff of anything you can think of. Joshua and your entire family will continue to be in my prayers.

Jennifer Turngren - 09/30/99 20:45:55
My Email:rzab@21mail.com
Home State - Country:: Dyer, Indiana - USA
Child(s) Name - Birthdate: Jared 1-16-99
Heart Defect(s): hlhs
Hospital - Surgeon:: Children's (Chicago) - Backer/Mavroudis
Surgery Name(s) - Date(s):: 1-22-99 & 6-9-99

Comments:
Good luck to Joshua! I found out at todays cardiology appointment that Jared's heart wasn't working very well & may need a transplant soon.

Jennifer Turngren - 09/30/99 20:33:24
My Email:rzab@N21mail.com

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Carol Pierce - 09/30/99 12:53:22
My Email:brett&carolpierce@wycol.com
Home State - Country:: New York
Child(s) Name - Birthdate: Ian, 12/24/96
Heart Defect(s): HLHS
Hospital - Surgeon:: U of M - Dr. Bove
Surgery Name(s) - Date(s):: 12/31/96, 7/23/97, 5/25/99

Comments:
Hi. Looking at the dates Ian was at the U of M, I'm sure we must have bumped into each other in the waiting room or the hall. I'm so glad Joshua is doing so well. Ian had a lot of trouble after the Norwood. We didn't leave Ann Arbor until 2/12/97. His he rt did well following surgery but his kidneys and liver failed and he was put on a pediatric catheter (dialysis). Ian is nothing short of a miracle for us. He breezed through his last two surgeries and his kidneys and liver have bounced back. The support f Dr. Bove and his staff are awesome. They worked real hard, as did Ian. He wears glasses now to correct a "lazy" eye, knows his ABC's and acts like any normal almost 3 year old. God bless and support all who have gone through this and those who will.Good luck to your family and may God continue to bless you!

Marisol Soto - 09/29/99 18:52:03
Home State - Country:: Queens, NY

Comments:
GOD BLESS YOU JOSHUA!!! YOU ARE A CUTIE.

Jeneal Jackson - 09/29/99 03:00:48
My Email:jacks@tisd.net
Home State - Country:: Tx
Child(s) Name - Birthdate: Layton Peuttus
Heart Defect(s): Very simular
Hospital - Surgeon:: Dr. Duff
Surgery Name(s) - Date(s):: numerous

Comments:
Laytons last surgery was in 1994. He is 8 yrs. old and in the third grade. He doesn't walk. Has only one good eye. His thumb on his left hand is not connected. and his thumb on his right hand is more like a finger. But he is smart and has personality lus. We couldnit love him anymore. He is an inspiration to his classmates, teachers, and everyone he meets.

gwen williams - 09/25/99 02:21:50
My Email:midwifewith5@aol.com
Home State - Country:: nebraska, USA
Child(s) Name - Birthdate: Wyatt Williams 2-4-00
Heart Defect(s): HLHS
Hospital - Surgeon:: ????????????????
Surgery Name(s) - Date(s):: ???????????????
Picture Link or Favorite Heart Site: left heart matters

Comments:
I am searching for Dr. Bove. Is he still doing surgeries? My baby is 19 weeks gestation and I am willing to travel to where Dr. Bove is currently. Please tell me where I can reach him ASAP. Phone numbers or e-mail, snail mail, etc. Thank you so much!

Jennifer Richman - 09/23/99 00:39:43
My Email:babyurarichman@ameritech.net
Home State - Country:: Michigan, USA
Child(s) Name - Birthdate: Sam & Judy 9/1/95, 11/27/98
Heart Defect(s): n/a
Hospital - Surgeon:: n/a
Surgery Name(s) - Date(s):: n/a
Picture Link or Favorite Heart Site: me & my brothers!

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donna Kemp - 09/22/99 16:30:30
My Email:Pariskaye@AOL
Home State - Country:: Cols, Oh
Child(s) Name - Birthdate: Elizabeth Lauren (Ellie)- 99-7-99-MY NIECE
Heart Defect(s): hlhs
Hospital - Surgeon:: musc, cHAS, sc
Surgery Name(s) - Date(s):: nORWOOD/9-20-99

Comments:
I was so encouraged by your website...Litle Ellie made it through the Norwood on Monday, but they could not get her heart to start to take her off of the heart/lung bypass machine.....Ther was a slight pulse...so the drs are going to try sometime this aft rnoon to start her heart again....Ellie is the first child of my youngest brother, Brian and his wife Kelly....Ellie began to have trouble breathing & feeding when she was just 4 days old. She was life flighted to CHas, sc at 5 days and has been in the PI there ever since...even through a major evacuation w/hurricane FLoyd! We are all very faith driven in our belief in God and the excellent surgions she has had. As Ellie's aunt, I am so praying for her strength to get her heart started today. Brian is t e seventh son in our family & the youngest...his twin sister Beth is at the hospital as well as our Mom to give support and love. They were so alone when this first happened because of the hurricane...noone could get in or out of Chas, South Carolina. I f el somewhat relieved to be typing this...I guess it is an avenue for release to a family that has been through the exact same medical crisis. Ellie had little of a ventricle and her aorta was 1.3 millileters (the smallest the surgeon has ever worked on) T is info is sketchy, but since we are out of state ...we are just going by info we hVEW RECEIVED VIA PHONE. As you must know we are on pins & needles ...waiting for the phone to ring and bracing for whatever news we are about to hear. I feel Ellie is stron willed and if miracles can happen...she certainly is a candidate....due to her getting through all of this already....The cardiologist who rode with her in the life flight said she was almost gone when they got from Myrtle Beach to CHas....and the surgio was very pessimistic of the odds of her getting through the surgury....she's hangkng in there and we would appreciate all the prayers and good thoughts sent her way. Thank you for allowing this forum for concerned families to convey their most intense feeling s to strangers in this time of crisis. Most appreciatively........"Aunt Donna K" God bless your family and Joshua, especially!

Shawn Neu - 09/21/99 20:04:41
My Email:ShawnNeu@aol.com
Home State - Country:: US
Child(s) Name - Birthdate: Bailey Neu 02-25-98
Heart Defect(s): left heart
Hospital - Surgeon:: Duke University - Ungerlieder

Comments:
Bailey is now 18 months old. He is 32 pounds and his sats are 88. He has already had his second operation and we just came from the cardiologist. we have to return in 4 months for another checkup. Bailey is doing so well, it has taken me this long to sear h out web sights again. I looked up Hypo plastic up on the web when he was first dianosed and it upset me so much I just didnt want to be reminded. I am glad things are going welland I feel sure our children will live a happy and fairly normal life. God B ess

LuAnne Morgan - 09/20/99 16:45:55
My Email:lmm111141@.aol
Home State - Country:: Michigan
Child(s) Name - Birthdate: Emily Morgan 9/30/93
Heart Defect(s): HLHS
Hospital - Surgeon:: Dr. Edward Bove
Surgery Name(s) - Date(s):: All three

Comments:
Our daughter Emily will be six years old next week and is doing great. She is on no medications and has started Kindergarten just like any other kid. She is a little small for her age, but other than that you wouldn't even know she ever had anything wrong.

patty Van Voorhis - 09/20/99 15:58:39
Home State - Country:: Bainbridge Island, WA

Comments:
My sister , who is 6mos. pregnant,unborn child has been diagnosed with hlhs. she is being seen at U of M and is in need of support. Thanks for your web site - I'm sending her and my parents a copy.

Bob Hayes - 09/17/99 22:44:32
My Email:bhayes@classic-printing.com
Home State - Country:: TN-USA
Child(s) Name - Birthdate: Christina Ashley- due 2/9/00
Heart Defect(s): HLHS
Hospital - Surgeon:: Vanderbilt Children's- Dr. Kavanaugh
Surgery Name(s) - Date(s):: leaning towards the Norwood repair
Picture Link or Favorite Heart Site: 1st visit

Comments:
I am so glad for you Joshua & your family. It helps to know that there are children doing so well after the Norwood. Me & my wife found out our 1st child has HLHS about 2 weeks ago. IT was simply devastating at first, but as time goes by and we gather information & pray we have hope that Christina Ashley(we named her already)will join the growing number of survivors of HLHS. We are just now almost 20weeks along so we have a ways to go yet to get prepared. We would love to hear from parents or parents to be with any advice or info, or just to share. E-mail me anytime.

Monique Benavides - 09/16/99 18:32:11
My Email:monique_benavides@hotmail.com
Home State - Country:: California
Child(s) Name - Birthdate: February 8, 1997
Heart Defect(s): Hypoplastic Left Heart Syndrome
Hospital - Surgeon:: University of California San Franisco

Comments:
I sympothize with you because my son had the same problem, but did not survive. He attended the norwood procedure and died when machines were take n off. He lived to be 11 days old and i still remember every 11 days as if they were yesturday. i now have a healty baby girl, but my lost son wil always be rememered. Thanks for you story and i hope the best for you and your family.

Lisa A. Lynn - 09/14/99 17:40:31
My Email:lisa.lynn@murraystate.edu
Home State - Country:: Benton, KY-U.S.A.
Child(s) Name - Birthdate: Joshua Spencer-May 26, 1999
Heart Defect(s): HLHS
Hospital - Surgeon:: Kosairs Children's Hospital-Dr. Austin
Surgery Name(s) - Date(s):: Norwood-May 28, 1999

Comments:
Joshua is awaiting the Glenn procedure. He has been doing well except for his heart rate going up 3 times. He has an extra electrical "circuit" to his heart that is making his heart beat at a continuous, fast pace when it becomes irregular. This "circu t" will be "disconected on Sept. 27, 1999(hopefully). I would love any support or advice anyone has to offer. We are all in this together, if you pray for Joshua, I will pray for your son/daughter. Please e-mail me. Thanks, Lisa

Carly Blankenship - 09/12/99 23:44:46
My Email:soon2brn@unc.edu
Home State - Country:: Burlington, NC

Comments:
Thank you for allowing me to view your website. I am a nursing student at UNC-CH and am doing a paper on HLHS. I am doing my pediatric rotation and had a patient with HLHS and wanted to find out more information about it. Glad to see things worked out for Joshua, hopefully my patient will have the same end results.

Brad & Judy Burns - 09/11/99 19:07:22
My Email:bradburns@mindspring.com
Home State - Country:: Arkansas
Child(s) Name - Birthdate: Michael 5-7-99
Heart Defect(s): HLHS
Hospital - Surgeon:: AR Childrens Dr. VanDevanter
Surgery Name(s) - Date(s):: Norwood 5-13-99

Comments:
We did not know of Michael's heart defect until after 24hrs old. We were very fortunate to be so close to AR Childrens Hospital. All to doctors & nurses were wonderful. At the time there were 3 other babies with HLHS. Two had been waiting for heart transplants for about 4 mths. and did receive them and were discharged a few days before us. The other aby died suddenly about a week after closing his chest and being extubated. Michael went through surgery without any problems. After getting his chest tubes out he had problems with fluid in his abdomen & his 02 sats were low so another chest tube had to be placed. He later also developed a blood clot in his atrim and had to be p aced on Heprin. Michael spent his 1st mth. of life in the hosp. but has been home with us for 3mths. now and with the exception of his heart med. & baby asprin he has a normal routine. He does have the bluish color and if that gets worse we will put him on 02. We are pla ning to have stage 2 around Nov. when he is 6mths.of age. Michael is a very happy baby and smiles alot. I know our decision to do the Norwood was the right one and if he later needs a transplant than we will do that but we felt if we could have several ye rs without the antirejection meds. needed with transplant than he would have a better quality of life. I hope this helps others & if anyone would like to share or needs info from our area please contact us through our email. Judy Burns

Brad & Judy Burns - 09/11/99 18:15:02
My Email:bradburns@mindspring.com
Home State - Country:: Arkansas
Child(s) Name - Birthdate: Michael 5-7-99
Heart Defect(s): HLHS
Hospital - Surgeon:: AR Childrens Dr. VanDevanter
Surgery Name(s) - Date(s):: Norwood 5-13-99

Comments:


Brad & Judy Burns - 09/11/99 18:11:03
My Email:bradburns@mindspring.com

Comments:


Roger & Kyler Mattingly - 09/09/99 11:43:43
My Email:Grantshart@aol.com
Home State - Country:: South Carolina
Child(s) Name - Birthdate: Grant 12-15-98
Heart Defect(s): HLHS
Hospital - Surgeon:: MUSC Dr. Scott Bradley
Surgery Name(s) - Date(s):: Norwood 12-29-98 Hemi-Fontan 7-2-99

Comments:
We read Joshuas story while we were in Charleston during Grants surgery and 1 month stay. It was so nice to read during a very scary time for us. Thank you and God Bless Joshua!!!

Roger & Kyler Mattingly - 09/09/99 11:31:35
My Email:Grantshart@aol.com
Home State - Country:: South Carolina
Child(s) Name - Birthdate: Grant 12-15-98
Heart Defect(s): HLHS
Hospital - Surgeon:: MUSC Dr. Scott Bradley
Surgery Name(s) - Date(s):: Norwood 12-29-98 Hemi-Fontan 7-2-99

Comments:
We read Joshuas story while we were in Charleston during Grants surgery and 1 month stay. It was so nice to read during a very scary time for us. Thank you and God Bless Joshua!!!

joseph chavez - 09/08/99 17:25:37
My Email:joechavezp7@yahoo.com
Home State - Country:: california, U.S.

Comments:
I think that joshua is a strong boy and has alot to live for.Please have a good life:)

Brenda Hancock - 09/02/99 17:41:52
My Email:dmspoe@dmrtc.net
Home State - Country:: Indiana, USA

Comments:
I found your site fascinating. I work in an early intervention program and had never heard of this particular defect until recently when I received a referral on a child with the defect. Then, within a month or so, I received another referral on a child with the same defect! So, I was very interested to read about the cases usually happening more often in certain geographical areas. Thank you for the information, and I am glad that everything has worked out for your family. God Bless You.

sharron livingston - 08/27/99 14:36:29
My Email:plivingston@amerisource.com
Home State - Country:: tenn.
Child(s) Name - Birthdate: tajai livingston 3-21-94
Heart Defect(s): same
Hospital - Surgeon:: vanderbilit
Surgery Name(s) - Date(s):: none

Comments:
my son had the same thing as your son,except his left side didn't full develop. i didn't wish for him to be cut on right away so i went with the transplant.we went 7wks then we had to do something so we scheduled the first procedure on may 16-94 but on ma 14-94 at 3:00am he passed away in his sleep.i'm thankful to God he didn't allow him to be cut on. i'm glad your son is doing well i'll keep you in my prayers.(by the way he was a twin and i still have a 5 year old healthy girl.

Annie Hummer - 08/27/99 03:44:10
My Email:anniehummer@hotmail.com
Home State - Country:: Ohio
Child(s) Name - Birthdate: Noah
Heart Defect(s): HLHS

Comments:
Thank you for your site. I just learned of my precious nephew's illness, HLHS, today, August 26, one day after his birth. Your site gives me hope. I plan to share the information I found here with family members. Glad to hear that Joshua is a healthy appy 3 year old! Thank you.

Heather MacPhail-Fausey - 08/26/99 17:50:37
My Email:macfoz@aeneas.net
Home State - Country:: Tennessee

Comments:
I looked up your site because some friends of ours recently lost their little boy lucas after he survived the Norwood procedure. Thank you for the information. We had never heard of this procedure until now. I am glad to hear that your boys are doing well . . . I have three of my own.

Gina Hart - 08/26/99 14:05:40
My Email:hartgl@stlo.smhs.com
Home State - Country:: Missouri, USA
Child(s) Name - Birthdate: Brock Gerard -due 11/22/99
Heart Defect(s): HLHS
Hospital - Surgeon:: Dr Huddleston, Children's Hospital; St. Louis, MO
Surgery Name(s) - Date(s):: Norwood

Comments:
We just recently found out about our baby having HLHS. If you have any information or web sites you have found helpful, please share with us. Thank you and God bless you and your family.

Amy Bergstrom - 08/26/99 04:55:34
My Email:amybergs@aol.com
Home State - Country:: California
Child(s) Name - Birthdate: Mia Caroline-8/06/99
Heart Defect(s): hlhs
Hospital - Surgeon:: Stanford (lucille Packart childrens hospitalchildrens ho
Surgery Name(s) - Date(s):: Dr. Micheal Black

Comments:
Our sweet baby girl had her first surgey August the 12th, she did great, it was the scariest time in my life. She is still in ICU because shes having problems with loosing weight, they tell us this is normal with norwood babys because of the difficulty th y have with feedings (she of course is on a feeding tube). We want her to come home so bad, but Im so scared,Im so used to looking at the monitors in the hospital, how will we know if shes OK at home? Any advice? This is our first baby and we would be ner ous parents with a perfectly healthy baby, so now we are petrified. I thank God for what he has done for us so far and pray for all the other familys as well. Mias Mom, Amy

paul sleeman - 08/25/99 20:44:31
Home State - Country:: michiganhunter
Child(s) Name - Birthdate: hunter 6996
Heart Defect(s): hplhs
Hospital - Surgeon:: um dr boveall
Surgery Name(s) - Date(s):: all three final one age 2

Comments:
DR BOVE IS THE GREATEST MAN I KNOW I TRUELY BELEAVE GOD PUT HIM ON EARTH FOR OUR BABIES WE ARE NOW EXPECTING OUR SECOND CHILD AND THE LOCAL DRS SAY EVERY THING LOOKS GREAT ITS ANOTHER BOY DUE 12-1 -99

rshah,M,D - 08/23/99 02:31:35
My Email:rugmini@pol.net
Home State - Country:: California

Comments:
Congratulations for Joshua and your family. I have a 4 month old patient with same condition planning for surgery. any suggestions?

Kelly Ashworth - 08/20/99 18:57:22
My Email:kashworth1@AOL.COM
Home State - Country:: Texas
Child(s) Name - Birthdate: Spencer, 11/22/95
Heart Defect(s): Hypoplastic Left Heart
Hospital - Surgeon:: Children's - Dallas, Dr. Ring
Surgery Name(s) - Date(s):: Norwood I 11/28/95, Glenn 7/9/96, Fontan 8/3/99

Comments:
Our son is doing great!! Has all three surgeries.

Gerald &Debra Moring - 08/20/99 06:29:07
My Email:moring@bayou.com
Home State - Country:: Summerfield,LA USA
Child(s) Name - Birthdate: Jacob Curtis Moring
Heart Defect(s): HLHS
Hospital - Surgeon:: Childrens New Orleans- Dr. Caspey
Surgery Name(s) - Date(s):: Norwood 8-2-99

Comments:
Great Site! Thanks for all the GOOD NEWS!

J.D. & Kathy Ross - 08/14/99 07:14:14
My Email:BullcalfR@aol.com
Home State - Country:: Colorado
Child(s) Name - Birthdate: Garrett Fritz Ross D.O.B.: 06-08-99
Heart Defect(s): HLHS
Hospital - Surgeon:: Childrens - Denver
Surgery Name(s) - Date(s):: TBA

Comments:
Our beloved son Garrett was diagnosed with HLHS at 31 weeks in utero. He is currently on a Broviac w/ prostaglandins and holding his own. We await a donor heart and pray each day. We've had to move from our home east of Colorado Springs to a small apar ment in Denver near Childrens Hospital. We would love to "chat" with you about your child, struggles, and Blessed successes.

katy guisti - 08/09/99 19:47:32
My Email:ktguisti@yahoo.com
Home State - Country:: Mass
Child(s) Name - Birthdate: Ralph Guisti- 01/23/97
Heart Defect(s): hypoplastic left heart
Hospital - Surgeon:: Children's Boston - Mayer

Comments:
Ralphy just underwent the Fontan procedure. He suffered a post-op blood clot of the cornary artery. He had the clots removed and despite the fact that his heart is weakened, he is doing fine in the ICU @ children's hospital.

kyle and jeanene - 08/08/99 02:46:55
Home State - Country:: pa u.s.
Child(s) Name - Birthdate: sept 29, 1999 due date
Heart Defect(s): hlhs
Hospital - Surgeon:: hershey medical center
Surgery Name(s) - Date(s):: soon after delivery

Comments:
any link to down's syndrome??????

kyle and jeanene - 08/08/99 02:46:55
Home State - Country:: pa u.s.
Child(s) Name - Birthdate: sept 29, 1999 due date
Heart Defect(s): hlhs
Hospital - Surgeon:: hershey medical center
Surgery Name(s) - Date(s):: soon after delivery

Comments:
any link to down's syndrome??????

Tony Fronk - 08/04/99 22:48:12
My Email:pioneermill@friendlynet.com
Home State - Country:: Ohio
Child(s) Name - Birthdate: 9/18/99
Heart Defect(s): HLHS
Hospital - Surgeon:: Riverside Hospital Columbus, Ohio

Comments:
Thank you for putting this site together, my wife and I are traveling down the same road you have traveled three years ago.

Lee Johnson - 08/01/99 16:29:56
My Email:toddnlee@bardstown.com
Home State - Country:: Bardstown, Kentucky
Child(s) Name - Birthdate: Ike- June 16, 1999
Heart Defect(s): HLHS
Hospital - Surgeon:: Kosair Children's Hospital- Dr. E. Austin
Surgery Name(s) - Date(s):: Norwood, June 18, 99
Picture Link or Favorite Heart Site: This one

Comments:
I wanted to log on and give an update. My son had the Norwood on June 18. After a 5 week hopital stay we are home! Ike is doing well. He is a slow feeder so he has a G-tube. We are looking at the Glenn sometime before Christmas. My thoughts are with all families who are facing this difficult road- there are happy endings.

arnetta springs - 07/30/99 17:27:35
My URL:http://www.felicia@bluemoon.net
Home State - Country:: New York
Child(s) Name - Birthdate: Davontae 3/17/1999
Heart Defect(s): HLHS/aortic atresia
Hospital - Surgeon:: Children's Hospital of Buffal- Dr. Eliot Rosengranz
Surgery Name(s) - Date(s):: Norwood-3/19/99; Glen- approx. date 10/99

Comments:
Praise God for Joshua. I'm nervous a little about Davontae's next stage, but I have to trust and have faith in God and know that he wil put his hands on the situation and everything will turn out o.k. Davontae was also a large baby(10lbs 4ozs), so he had enough weight to fight his doctors say.He came home after 3 weeks weighing 8lbs 8ozs. and at 4 months he's currently 13lbs 6ozs. so he's getting there. God has truly blessed him, his motor skills are o target and his heart is working wonderful. Thanks again for your web site, and sharing your miracle, The beginning is exactly like mine, and I KNOW the ending will be the same as well.

Kathi K. - 07/29/99 20:42:31

Comments:


Heather Cochran - 07/29/99 18:25:39
My Email:jhac99@yahoo.com
Home State - Country:: Georgia
Child(s) Name - Birthdate: Austin 01-13-99
Heart Defect(s): HLHS
Hospital - Surgeon:: Egleston Childrens Hospital- Dr. Kanter
Surgery Name(s) - Date(s):: Norwood 01-15-99 (2 days old) Glenn 07-22-99

Comments:
I have enjoyed reading Joshua's story and it touches so close to home. I'm so glad Joshua is doing well. Austin just got home 3 days ago from his second surgery. He is doing GREAT! I would enjoy hearing from other young parents of children with HLHS. My h sband and I are only 22 years old and this was our first child. God Bless you all!

Denise - 07/28/99 20:48:26
My Email:dspires@mcteng.com
Home State - Country:: Orangeburg SC
Child(s) Name - Birthdate: Michaela-7/28/98
Heart Defect(s): Hypoplastic Left Heart
Hospital - Surgeon:: MUSC- Dr. Bradley
Surgery Name(s) - Date(s):: Norwood @ 10 day's old

Comments:
Hi! I'm Michaela's aunt. Michaela's next surgery is to be scheduled around the last week in August, depending on the out come of her heart catherization that's to be done August 18th. Today, we're celebrating her 1st Birthday. And, I know deep in my heart that we will be celebrating many more birthday's with Michaela. She came through the first surgery with flying colors. Everyone told us the Norwood was the worst one of the three step surgery. And she should have no problems with the other two surgeries. eading your story has made me feel alot better. I'll keep you informed on Michaela's progress.

Terri Glenn - 07/26/99 05:51:47
My Email:glenntm@uswest.net
Home State - Country:: Arizona
Child(s) Name - Birthdate: Tommy 5-9-90
Heart Defect(s): HLHS
Hospital - Surgeon:: UCSF Dr. Gary Haas
Surgery Name(s) - Date(s):: Norwood, Glen, Fontane
Picture Link or Favorite Heart Site: this one...my first

Comments:
My heart is filled with joy to see so many sucess stories out there; as 10 years ago, there were not as many. Tommy is 9 years old now, and other than the fact he has to take Coumadin daily, is a normal, active fourth grader. I would love to hear more f om parents with "older" HLHS kids, and hear the kinds of things they deal with; both at the cardiologist's office, and at home. When Tommy had his Norwood procedure done at UCSF, he was the first child to survive and go home! It's amazing how far they h ve come over the past 10 years. Tommy began his surgeries at UCSF, but he has also been to UCLA, Children's in DC, and CHOP. We now reside in the Phoenix area and have not had any procedures done here. We see the cardiologist just once a year. Again, hank you for your inspiring website, and I hope that many new parents of HLHS can look at my son Tommy, as an inspiration that "yes" the surgeries can work and can let these kids live a great and normal life!! My son is just one of these fine examples... nd so many more right here in front of us.

henry potato - 07/26/99 03:59:14
My Email:nicepotato@hotmail.com
Home State - Country:: potato land
Child(s) Name - Birthdate: potato junior
Heart Defect(s): potato attack
Hospital - Surgeon:: Dr Bismark
Surgery Name(s) - Date(s):: potato surgery

Comments:
potato

Tom and Penny King - 07/24/99 03:18:55
My Email:3kings@innernet.net
Home State - Country:: PA
Child(s) Name - Birthdate: Jaryd- 7/22/93
Heart Defect(s): HLHS
Hospital - Surgeon:: Hershey Medical Center Dr. John Myers
Surgery Name(s) - Date(s):: Norwood- 8/93, Fontan- 5/94

Comments:
I really enjoy your site. Everything brings back memories of our son's early experiences with HLHS. We just celebrated his 6th bithday and he is doing great!! I'm glad your son is also doing great. Our son has also been diagnosed with Aspergers Syndrome w ich is a high fuctioning autusim. To me this is harder to handle than the HLHS since this affects us all the time. We were told that neither condition is related to another. Anytime you or anyone else would like to e-mail us feel free to do so. We like to hear from others with similar conditions as our sons. We will keep Joshua in our thoughts.

Patrick Cain - 07/22/99 21:23:30
My Email:PJC153@aol.com
Home State - Country:: Chicago,IL
Child(s) Name - Birthdate: Patrick Jr./ 10-12-99
Heart Defect(s): HLHS
Hospital - Surgeon:: Childrens Memorial Hospital

Comments:
Hello, I want to thank you for this page, it is very informative for us, we were told last week that our first child has this disease. If there is any further information you can send to us, please do. We are very nervous and scared just as we are sure you were too. Our prayers are with your child as well as ours. Patrick & Jennifer Cain

Uwe Baemayr - 07/22/99 05:55:50
My URL:http://www.baemayr.com
My Email:uwe@liant.com
Home State - Country:: Austin, TX
Child(s) Name - Birthdate: Eric - 5/11/91
Heart Defect(s): Hypoplastic Left Heart Syndrome
Hospital - Surgeon:: Dr. Norwood/CHOP
Surgery Name(s) - Date(s):: Norwood 5/18/91 HemiFontan 11/5/91 Fontan 6/2/92
Picture Link or Favorite Heart Site: http://www.baemayr.com/eric/heart

Comments:
Hi, Russ! It's great to hear that Joshua is doing so well. I wanted to let you know that the link to Eric's picture on your "Internet Friends" date is broken, but there are recent pictures at "http://www.baemayr.com/eric/heart". I also enjoyed reading he other messages in Joshua's guestbook. Best wishes, Uwe Baemayr (Eric's dad).

Christina Snook - 07/22/99 01:58:32
My Email:elmo@oknet1.net
Home State - Country:: Oklahoma, USA
Child(s) Name - Birthdate: Riley Snook
Heart Defect(s): HLHS
Hospital - Surgeon:: Childrens Oklahoma Dr. C. Knott-Craig
Surgery Name(s) - Date(s):: Norwood 3-22-99

Comments:


Jill Sorensen - 07/20/99 06:43:09
My Email:camfam55@aol.com
Home State - Country:: California
Child(s) Name - Birthdate: Jeni (6/25/85)
Heart Defect(s): HLHS/diagnosed inuteral
Hospital - Surgeon:: UCLA/Dr. Hillel Laks
Surgery Name(s) - Date(s):: Norwood@ day 1...Fontan@ 17mo. Pacemaker Implantation @ age 3 for SVT'S and Bradycardia, many caths, and 2 radiofrequency ablasions...Right now she is stable thriving well.
Picture Link or Favorite Heart Site: Baby Hearts Press

Comments:
I am a new kid on the block...I am just starting to learn how to use my computer. It is amasing what things I can do and the knowledge I can gain. I just wish I had this support 14 years ago when Jeni was first born. I wouldn't have felt so alone...... Anyway Thanks....... Love, Jill

mike and steph davis - 07/19/99 14:28:14
My Email:lilfighter@erienet.net
Home State - Country:: Ohio- usa
Child(s) Name - Birthdate: Anthony Michael Davis - due date 9-28-99
Heart Defect(s): HYPOPLASTIC LEFT HEART SYNDROME
Hospital - Surgeon:: Cleveland Clinic - Dr. Mee
Surgery Name(s) - Date(s):: unknown

Comments:
Our 2nd son is due 9-28-99. we were told he has hlhs, and the doctors gave us the option of terminated the pregnancy - obviously we choice to give him the chance of life. any helpful hints please e-mail us - thanks very much.

Cynthia Geracoulis - 07/19/99 04:01:02
My Email:VZXE24A@prodigy.com
Home State - Country:: VA
Child(s) Name - Birthdate: 6 months pregnant--Andrew Charles
Heart Defect(s): double outlet/single ventricle (HL), small aorta
Hospital - Surgeon:: unsure as of yet
Surgery Name(s) - Date(s):: unsure, probably 3 step repair vs. transplant

Comments:
Very grateful for your site!!! AS you see, we just found out about this and are gathering as much info. as possible. THANK YOU!!!

anthony franchini - 07/17/99 16:15:55
My Email:jdock086@aol.com
Home State - Country:: PA
Child(s) Name - Birthdate: unknown, sept.14,1999
Heart Defect(s): HLHS
Hospital - Surgeon:: dupont,de-DR.NORWOOD
Surgery Name(s) - Date(s):: norwood procedure