The doctor called this evening about our baby. Bad news.
The baby may have Trisomy 18, called Edwards Syndrome. It's similar to Downs Syndrome but usually fatal. 95% die in utero; those who are born alive live only 5-15 days on average. Only 5-10% survive their first year.
There is a 1 in 21 chance of our baby having Edwards Syndrome, based on the screening tests we've already taken. We'll have a sonogram this week and perhaps other tests to learn more. We DO NOT have a diagnosis yet.
Please pray for our baby.
Pray first that we would be one of the 20 out of 21 who have healthy babies under these circumstances.
Pray that if the baby is positive for Trisomy 18, that he or she would be one of the very few that live past infancy.
Pray for Shannon and me to handle the current uncertainty and potential grief that may be in our future.
Pray for the boys. They've been very aware of this pregnancy; we all pray for the baby every night. They currently know that the baby might be sick and could possibly die, and that Mom and Dad are very upset, but we haven't given them any details this early.
2 comments:
I'm sorry to hear you are going through a difficult and stressful time in your pregnancy. Waiting for test results is nerve racking. If you haven't already found us, here is the website for the Trisomy 18 Foundation, www.trisomy18.org. You will find a wealth of information on Trisomy 18, along with many loving and caring families that have walked this journey. As we know, each child with Trisomy 18 is unique. While the list of known defects is the same, some children are more affected than others. I encourage you to register and join our support boards. You'll be able to communicate with other families awaiting further testing and families affected by Trisomy 18. Right now the best thing to do, is gather up as much information as possible. Please know our hearts are with you, and we're here to support you.
Warmly,
Bianca DeLone
Staff at Trisomy 18 Foundation,Inc.
BDeLone@trisomy18.org
www.trisomy18.org
www.trisomy18support.org
Jared-
I will be praying for you guys!
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