Our New Baby

~~~~~

This page is dedicated to our new baby who is due on the 15th of April, 2007. Below is a 3D scan of her taken at 21 weeks.

Now you may be wondering why did we choose to have another child when we have the 50/50 chance of passing on Crouzon Syndrome, and because we already have two children with high needs? Well the answer to that is easy - we wanted another child to love and raise, and we knew that God would give us the child that He has planned for us. If the baby has Crouzon Syndrome then God will give us the strength to deal with that, as He has with Melissa and Nick. If the baby is born without Crouzon Syndrome then we will be very happy because that will mean hopefully a little less stress and hospitals in our lives. But no matter what, we will cope with what God has for us.

You may be wondering if we know what the doctors think. Well at 13 weeks the doctor thought that the baby did have Crouzons because of thickening of the back of the neck (like Melissa and Nick had).

But at the 21 week scan (above) the doctor was not so sure and said that the baby may not have Crouzons at all. This was because her eyes were only slightly wider then the average baby. Nick's at his 18 week scan were two and a half times wider then the average baby's.

At the final scan which was at 30 weeks, the findings were that the baby's sutures were still open and that her eyes were the same width apart that they were at 21 weeks. This was very good news. But her eyes were prominent which they should not be for 30 weeks. And of course we know that prominent eyes are a major characteristic of Crouzon Syndrome. So we are going into the birth thinking that our little baby girl also has Crouzons.

The next time we will see her now is when we hold her in our arms.

And here she is!

Jessica was born at 8:17 am on Wednesday the 4th of April, 2007. She is healthy and we are all very much in love with her.

You may be wondering - does she have Crouzons? Well the answer is - the doctors are unsure. All of her sutures are still open as they were in the last ultrasound, though her lamboid suture may be in the process of fusing. Her eyes are not really prominent but are slightly wider apart then the average. Jessica does have a gap between her big toe and her second toe which could indicate Crouzons. So....she will have genetic testing done to cut out the guess work and we will know when those results are in. But as we have always said...it doesn't matter as she is absolutely beautiful and a blessing from our awesome God.

.-.

Well we have had a bombshell since I last wrote the above. Jessica does not have Crouzons but she does have Down Syndrome. The characteristics stated above are indicative of Crouzons but they are also indicative of Downs. We did not see this coming as all through the pregnancy the focus was on whether she had Crouzons. After birth the focus was on whether she had Crouzons, so it was not picked up until we went to see the geneticist when she was 4 weeks old. The geneticist looked at her, did a few tests on the floppiness of her body and stated what she thought. Backed up by the blood test, she was correct. We then had to wait for the DNA test to come back on the Crouzons, as there was still the 50/50 chance of her having Crouzons as well. God in His wisdom did not allow her to have the Crouzons which is an absolute blessing for her. We are now immersing ourselves in finding out as much information as we can on Downs, seeking out help and support through an Early Intervention team and an egroup and we are loving, loving, loving Jessica. It does not matter to us that she has been born with Downs though it was unexpected. She is our little gorgeous gift from God and she is a blessing to our life. We absolutely adore her.

see Jessica's Story: My Baby born with Down Syndrome