Hearts for Hearts’ Sake News

Contents

Just The Facts
A Thought or Two
From China with Love

Did you Know?

Introducing Duree and Russell Downey

Bravehearts-- Children undergoing surgery soon!
Featured Physician: Dr. Parvin Dorostkar
Announcements
Acknowledgments
Disclaimer

Tricia’s Notes

Just the Facts

We have good news on the drive to get our organization nonprofit status. We have collected $710 dollars toward our goal of $2000. We also have several leads on attorneys who may be able to help us pro bono. We are indebted to those who have already contributed, and if you haven’t yet had a chance to contribute, there is still time!

Even a small contribution will go a long way toward helping us achieve our goal. At minimum, to get the paperwork going, we need to raise about $800 more. Thank you in advance for your generosity. Please make checks payable to
Stephen Ellis
and mail to:
Hearts for Hearts’ Sake
c/o Tricia Christensen
4050 Princeton Drive
Santa Rosa, CA
95405

Please help us also by interesting others in our cause. We and our children are primarily affected by CHDs, but certainly others of our family and friends are secondarily affected.Tell them your story and tell them about our organization and its aims for helping all affected by CHDs.

We also want to particularly thank those who offered us substantial contributions of over $100 dollars: Kristen Downing, Scott and Janet Davis, Lisa Rasmussen and Burr Nash, and Murty and Lakshmi Valiveti. Your faith in our organization makes us very proud! Thank you for your generosity!
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A Thought or Two

I am especially thrilled to introduce Duree and Russell Downey to you in this newsletter. I first met Duree when we both were in the hospital with our baby sons. Duree was quite young and yet seemed to handle the stress and the life and death struggle her son was going through with an ease and a grace that stunned me.

Since we first met, we’ve become great friends over time, and to this day, she surprises me with how quickly she meets the challenges of parenting a child with quite severe CHDs. She also does something that strikes me as remarkably intelligent; she knows how to ask for help.

Particularly when a child is not doing well, the burden and stress can be enormous. When Paul is having a bad day, Duree is on the phone and calling me. Even if it’s just to let off steam, bad days are good days for using the network. In the next month, you will be receiving a list of families who have children with similar heart defects, and also of families who are in the same general area. Don’t be shy. Get in touch with others on this list and start talking! And as director, my phone line (707) 525-1558 is available too, and it is not a “bother” and I am not “too busy” to take your calls or emails.

We can’t make our kids better, but we can make living with CHDs a lot better for each other. So give it a try. Pick up the phone or write an email. After all, you are not writing to strangers, but people who are, too, in the “family” of CHD experiences.
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From China With Love

In October of last year I was reading my email from the pdheart list when a particular post caught my eye. It was a desperate plea from a man in China, Yongxin Deng, whose son had been diagnosed with single ventricle and pulmonary hypertension. The doctors in China could do nothing for his son and gave him no hope.

At the time, Yongxin was on an educational exchange program in Australia, while his wife and son were home in China. From across the internet, he pleaded with members of the pdheart family to find help for his son, Shao han.

His pleas did not fall on deaf ears. Within a few weeks, Maryanne Wehland in Oregon set up a fund to help him, and then Brenda Booth, a mom from Los Angeles (and one of our newest HFHS members) got involved. Between the two of them, they raised the funding for Sho Sho to be seen at UCLA.

Some time later, NBC nightly and the LA times decided to cover the story and now the money has been raised for Sho Sho to have a PA banding surgery and to go on, hopefully, to have a Glenn procedure. Because of the high pressures in his lungs, it is unlikely that he would ever be a candidate for the fontan. Yet because of the compassion of others, Shao han’s life is likely to be extended. And for the first time, the Dengs have hope.

NBC nightly plans to continue to follow this story, so please keep tuned in for more updates. At this date Sho Sho’s surgery is scheduled for April 14th. The work of both Brenda and Maryanne evidence how much compassion lives in those of us who have children with CHDs. They deserve so much praise for their work on behalf of the Dengs.
Tricia Christensen
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Did You Know?

The pdheart mailing list is an excellent place for parents to meet others in similar circumstances. This email list has over 200 participants from many parts of the world. The mail can be quite heavy at times, sometimes amounting to 50 to 100 messages a day, but there is a digest option for the list too. If you’d like to subscribe to pdheart, go to:
http://www.strata.ca/ ~plittle/pdheart/
and follow the instructions for joining the list.

Two other helpful mailing lists are the achd (adults with congenital heart defects) and the hlhs (hypoplastic left heart syndrome) lists. If you are interested in either of the above, you can get subscription information at http://www.tchin.org
In addition to the subscribing information, this web page, The Children’s Health Information Network, has much to offer in the way of links to good informational resources.
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Introducing!
Duree’s Story

My name is Duree Downey and I am 20 years old. I have a son, Paul, with HLHS (hypoplastic left heart syndrome). I was 18, single and a first time mother when I gave birth to Paul (his father didn’t want to be part of his life). During the last three months of pregnancy I experienced some high blood pressure and some toxemia, but other than that, my pregnancy was great. In fact, I was told that Paul had a beautiful heart beat and that he was going to be a very healthy baby.

It was 5:00 PM, August 2nd 1996. My water had broken and the contractions were hard and painful. I was so excited and scared, but nothing in the world could have prepared me for the biggest shock of my life that was waiting for me. My labor lasted for 18 long hours. At 11:48, AM August 3rd, Paul was born. He was beautiful.

Paul was a little dusky; his umbilical cord was wrapped around his neck twice. I got to hold him for about ten minutes, then the doctor took him away to clean him and make sure he was fine. His APGAR scores were 8 and 9. The nurses took me to my room and Paul to the nursery. I remember I kept calling the nursery reminding them that I was planning on breastfeeding Paul. Hours went by and I was constantly calling the nursery asking for my son. Finally a nurse told me that they were keeping a close eye him and that his pediatrician was coming to talk to me.

A few minutes had gone by when the pediatrician came into my room. He told me that Paul had heard a heart murmur and the hospital wasn’t equipped to do tests that would show how severe his murmur was. So he had called a hospital that had the equipment and pediatric cardiologists and that they were on the way for my son.

I could go to the nursery and see Paul, the doctor told me, but he had some tubes in him, he was on oxygen and they were still trying to place an IV. I got to the nursery and as soon as I saw him, I almost collapsed. He looked awful. I could see that he was in so much pain. As they poked him, tears would fall from his eyes and he would try to cry. His mouth would open, but nothing would come out. He lay there blue and his body shaking. I couldn’t take it anymore so I went back to my room. About two hours later the doctor told me the team from Valley Children’s hospital was there and preparing Paul for the hour trip he would take.

The transport team brought Paul to my room before leaving. He was in an isolette, hooked up to machines. He looked so lifeless. I got to touch Paul’s little hand through the isolette before they took him, and was told to expect a call from a cardiologist at Valley Children’s. My family stayed with me for a while but finally had to go home themselves.

Near midnight, the cardiologist called to tell me that Paul had HLHS and PDA (patent ductus arteriosis) and that he would be flown to UCSF the next day. I would have to get to UCSF to sign the consent forms by early the next day. He also told me that Paul had only a 3% chance of surviving. I completely lost it and couldn’t stop crying, especially since I’d been told Paul only had a heart murmur, then later to be told his chances of survival where so small! I frantically called my parents and cried with them.

The next morning I was discharged very early and was on my way to see Paul. He was hooked up to so many machines I didn’t know where to touch him. I spent most of the day talking to him, letting him know that I was there for him. The transport team arrived from UCSF that evening and explained to me in greater detail about Paul’s heart. They said his left side was extremely hypoplastic but his weight was very good, a definite plus.

When I got to UCSF the next day, it was hard to imagine but he was hooked up to even more machines. I talked to many doctors and discussed with them what steps would be taken. I was given 3 options: (1) To go through three surgeries (the Norwood, Glenn and Fontan); (2) to wait for a heart transplant; (3) to take Paul home and let him die in my arms.

I decided on the surgeries and Paul did have a difficult time. We were in the hospital until October 3rd. In that time, Paul required not only the Norwood, but a tracheostomy and GI peg. But at last we were on our way home.

Paul was in and out of the hospital for the first month he was home. In December, we were back at UCSF to take out his trach. It had to be removed before they could proceed to the Glenn. With us was Russell, who was soon to be Paul’s step-father. In January, Paul had the Glenn and we were home this time in 4 days. What a difference it was! It made it a lot less stressful and then we were home again.

Paul was rehospitalized for two weeks after contracting RSV, but since then we haven’t had so many problems. Paul is 19 months now and looking GREAT!!! He’s walking and running, getting into everything and definitely keeping us on our toes. He also has a new baby brother, Phillip.

We are enjoying every day with our wonderful children and take nothing for granted. Paul has a TERRIFIC cardiologist, Dr. Brook. Many doctors treated me like I was a “baby” and didn’t or couldn’t understand anything, but not Dr. Brook. He always treated me as an adult which made things a lot more pleasant for me.

We also have met many families who have shared their experiences with us and given us their support. I want to remind all parents that we are very blessed to have our children and tell them to try not to ever give up. Miracles do happen! Good luck to everyone!!!

Russell’s Story

I first met Duree while she was still pregnant with Paul. We saw each other a few times but then lost touch. By the time we met again, Paul was already two months old. She called me to tell me they were home and explained all that had happened since we’d last seen each other. I still remember the first time I saw Paul, I couldn’t help but fall in love with him. I soon found myself spending almost all my time with Duree and Paul, learning everything I could about Paul so I could better understand his heart defect. He just grew on me with his wonderful smile.

In December ‘96, I went to UCSF for the first and surely not the last time. Paul had outgrown his trach, so they did a bronchoscopy to see if it was still needed. It turns out that the trach was putting Paul into CHF (congestive heart failure) and the trach needed to come out before the next heart surgery. When they took Paul downstairs, I can’t describe the way my heart sank down to my ankles. Before they took him, they told us that if Paul came back with the trach, we should enjoy the time because there would be nothing else they could do for him. After Paul went to surgery, I talked Duree into going downstairs for some fresh air. They said they’d page us if anything good or bad happened, or when he was finished.

After about an hour we got a page and we worried because it was so soon. The procedure was supposed to take two or three hours. It turned out to be a wrong number! I remember after that that there was no way I could have talked Duree into staying outside; I was just trying to keep her from worrying so much. However, I did convince her to go to the cafeteria to get something to eat and drink. We waited in the cafeteria for two hours before we got a page saying he was back in the room.

We went straight to Paul’s room, practically running. When we got there he still had a trach in so I asked why. I found the surgeons and they told me that the trach would be coming out in about two days because his throat was a little swollen. I went and told Duree and I never saw her cry so hard; I cried too.

Paul had his surgery and it went perfectly. We had him home in a few days and it was so different with the trach out. We could actually hear him cry, and he figured out all he had to do was cry and mommy and daddy would be right there.

Paul was home for about one month before he had to go back to UCSF for his Bi-Directional Glenn. I was very wary of this surgery because it had only been a month since his trach surgery. As I walked through the doors at UCSF, I couldn’t believe it had only been a month since were were last there. It felt like a lot longer.

I don’t really remember much from it except that while he was under it seemed like it took forever for him to get out of surgery. When I finally got to see Paul, he was hooked up to so many machines, I couldn’t help it. I had to cry even though I knew I had to be strong for him.

We stayed with him in shifts during the night, and during the day we were in there with him as much as possible. Paul was only in Peds ICU for one day. Duree said I lucked out because the first surgery made this one look like a piece of cake. After getting out of PICU, Paul was only on the floor for three days before we went home. I didn’t know what to think, except that the doctors knew what they were doing. After all, they were part of the reason Paul’s here with us today.

Paul is now doing fine. He has been walking for about two months and now has a little brother, Phillip; he has grown quite fond of him. I would like to thank the medical staff at UCSF, but a special thanks to Dr. Hanley (Paul’s cardiac surgeon), and Dr. Brook (Paul’s cardiologist) for their hard work. Paul is a great example of just how far our technology has progressed.
Duree and Russell Downey
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Bravehearts!

In May, two children from our HFHS group will be undergoing surgery. Eli Nash(almost 3), son of Lisa Rasmussen and Burr Nash will be undergoing the fontan. And Henry Holtz(7) , son of Kim Cuscaden will have a mitral valve replacement (both at UCSF). Please keep these families and their children in your thoughts in the next month or two. I also personally ask for your good thoughts for my son , Gerard. He’ll be having a catheterization on May 28th in preparation for his next surgery. If your child is facing or has had a recent surgery, please let me know so I can announce his or her name in our newsletter! Never underestimate the power of positive thinking!
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Featured Physician
Dr. Parvin Dorostkar

When I have spoken with other parents and they’ve mentioned cardiologists they’re particularly fond of, the name Parvin Dorostkar comes up frequently. Parvin is certainly a well-loved member of the UCSF cardiology team, and after a brief telephone interview with her, I can understand why. She stands committed to fostering relationships with her patients and loves the elusiveness of her specialization, pediatric cardiac electrophysiology.

The educational route to this specialization is the same as that to pediatric cardiology. Dr. Dorostkar received her Pediatric training at the University of Utah, Salt Lake City. She next specialized in Pediatric Cardiology at the University of Michigan. Beyond that she spent an additional two years at Michigan to specialize in electrophysiology.

This specialty is essentially the study of arrythmias(abnormal heart rhythms) which arise from problems with the electrical system of the heart. These can be broken into two major categories, tachycardias, faster than normal rhythms and bradycardias, slower than normal rhythms. Further precise distinctions can be made and Parvin was quick to point out that no two arrythmias are exactly alike, even if they fall into the same basic class. “There are as many different faces to arrythmias as there are to the human face.”

Some abnormal rhythms are congenital. About 1 in 250 to 1000 babies are born with a congenital problem which directly causes arrythmias. Many others are caused by damage to the electrical system of the heart during surgical repairs for other congenital heart conditions. Some of these arrythmias are transient and resolve without necessitating treatment. Others require treatment and the treatments are as varied as the arrythmias themselves.

Essentially there are about 5 or 6 ways to test for arrythmias. The best way, but not always possible, is to record an episode of abnormal rhythm on an EKG. If no arrhythmia is recorded during an EKG, but the doctor still suspects one exists, several other tests can be tried. Holter monitors, worn for 24 hours, have a better chance of catching an elusive arrythmia. Tests on treadmills can spark an episode of arrythmia where the holter monitor has failed, but this test cannot be run on very young children.

Yet another test that can be run is called Transtelephonic Event Monitoring. A patient is given a small device which can record an episode of arrythmia and pass it through the telephone line to the hospital to a doctor who then analyzes it. Usually this testing is used when other tests have failed to discover an abnormal rhythm, and where the episodes of arrythmia are too short for a patient to get to the hospital and have an EKG done during an episode. But Parvin says “Nothing is as good as a high quality EKG.”

Slightly more involved testing would include electrophysiological studies in a catheterization lab. Finally, after surgery, when there are still epidcardial wires left in the chest( in case arrythmias do arise) , the heart’s electrical system can be tested.

I asked Parvin how many suffer from “dangerous” arrythmias, but she suggested that question is not really viable. “Danger is a relative term. This is how I explain it to the parents. If you have a short circuit in the car and it happens occasionally, say once a year, it may not be that much of a problem. But say you have an emergency meeting and the car suddenly short circuits and won’t start, then it’s really really bad.”

But Parvin also points out. “Problems with a car or its electrical system really cannot be compared to the seriousness of cardiac arrhythmias. Everyone understands the complexities of trying to figure out an electrical problem with a mechanical device; it's hard and frustrating and sometimes not rewarding. The human heart and soul are much more complicated than a mechanical device - not to mention the additional burden of uncertainties associated with relative danger / risk of death and elusiveness of the arrhythmias. But we must remember to try to do our best to figure out what is going on and then try and treat it the best way we can. JUST DON'T GIVE UP!!”

Arrythmias occurring post-surgically are difficult to track numerically because these numbers are always evolving. Bradycardia in the pediatric population is probably most commonly caused by heart surgery. Dr. Dorostkar is currently involved in a study where they are attempting to produce arrythmias in animals by performing heart surgery and then working to correct those arrythmias through various treatments. This study will hopefully eventually lead to more understanding of how precisely the heart’s electrical system gets damaged by surgery, and what perhaps can be done to reduce the risk of occurence.

Certain types of surgery are connected more closely to post-surgical arrythmias than others. And most of us know that when our children have surgery, there is a risk, sometimes minimal, that the child will suffer damage to his or her electrical system. Sometimes post-surgical rhythm abnormalities are transient and resolve on their own after a few days. But clearly research projects which will hopefully help to reduce the risk of post-operative arrythmias are indeed encouraging.

But how can parents, especially those of young children, suspect that their child might be suffering from episodes of arrythmia? Parvin says “The parents almost always know. They know something is wrong, even though there may not be any clear signs.” She further believes that it is important for ALL parents, not just those with kids with heart defects to be prepared by knowing how to perform CPR.

Parvin does a lot of activist work with SADS, a group which promotes awareness of Sudden Arrythmia Death Syndrome. In general these deaths occur because an arrythmia was never detected until a deadly or life-threatening abnormal rhythm occurred. While these deaths are by no means common, they certainly do warrant knowing what to do in the event that someone suffers from a life-threatening arrythmia we are unaware of. And for those of us with children with heart defects, it is especially important that we know infant and children CPR in the event of an emergency.

Like the doctors I have interview before, I asked Parvin why she chose electrophysiological pediatric cardiology as her career. Her simple but passionate response: "I love it!" As with many parents of kids with CHDs, she is daily faced with uncertainties and so many questions particularly when attempting to track elusive arrythmias. Some abnormal rhythms are episodic and difficult to record with the available tests. Parvin thrives on this mystery, on the unanswered questions, and tries to convey her enthusiasm to the parents.

And perhaps this is what makes her so respected by her patients and her parents. She intimately understands the difficulties of uncertainty and the lack of answers, and she strives to find the answers. Parents feel assured that “Parvin is on the case” and will not rest until she finds solutions. And there are situations too, where the answers are relatively straightforward. Much of her work does involve “fixing” arrythmias that can be treated, “where a short circuit is found and repaired.”

Dr. Dorostkar is most proud of her ability to form relationships with her patients and their parents. “I learn more from the parents of patients than I do from anyone or thing.” She likes the balance of the aspects of her job which are so science-based and research based with the aspects of her job that are based on relating to others. And she does appreciate how hard it is for parents to live with the uncertainties, but pragmatically observes “That is life, and it is hard. In the larger scheme of things life is full of uncertainties. Electrophysiology just happens to really bring that out and demand it [this recognition] of you.”

Dr. Dorostkar would like to see much more devoted to research, especially because of the uncertainties. She thinks the answers may lie in molecular cardiology and what that will reveal on the most basic of levels about arrythmias. Also she is currently working on a study which will hopefully produce a method for detecting rhythm problems in the fetal heart.

There may be mystery and elusiveness in Parvin’s daily work, but there is certainly no mystery as to why she is so effective as a doctor. Her openness, genuine concern for both her patients and their parents, and her strong passion for her profession are all self-evident. I, for one, am glad to know that Parvin is out there, smoothing the road for her patients and trying to “find” the answers.
Tricia Christensen
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Announcements
Help Wanted!

We are still looking for a few more good people to join our Advisory Council which will become our initial board for HFHS. Currently council meetings are held on the fourth Friday of every odd numbered month at 7 PM. We would like to especially invite those of you in the business and economics community to consider joining our council. Please contact me at (707) 525-1558 to discuss the possibility of working with our council.

Tell Your Story

Introduce yourselves to the HFHS readers. We need your stories for our newsletter. These stories are a source of continual encouragement for many of us, so please send us yours and let us know how you, your family and children have experienced life with CHD.
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Acknowledgments

We thank Duree and Russell Downey for contributing their stories to our newsletter, and to Parvin Dorostkar for donating her time for the interview. We are also grateful for UCSF’s continued support of us through printing and distributing our newsletter. And lastly we’re indebted to Miriam Ellis for continuing to provide us with graphic art for our print version of the newsletter.
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Disclaimer

It is never the intent of this newsletter or the Hearts for Hearts' Sake organization to substitute for regular medical care or advice from your children's doctors. Always consult your doctor about any medical procedure, treatment or suggestion that you might read about in this publication or in any other informational publication.

No advice offered here can in any way take the place of the individualized care your child receives from his or her physicians.

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