Our story of our first baby, Noah, who was diagnosed with Trisomy 18 in April, 2010.
Thursday, April 8, 2010
I'm sorry to relay this news to you via email, but it's just too hard for me any other way right now.
About two weeks ago we did a screening test for development abnormalities for our baby. One of the results came back abnormal for the AFP test. With a 25% false-positive rate, and Dave and I being young and healthy, we were pretty sure it was nothing, maybe that the baby was older than the doctors had thought.
On Monday we had an appointment with a Fetal Maternal Medicine Specialist to do an ultrasound and received the worst news any expectant parent can receive: our baby has Trisomy 18. Her brain is filed with water, her heart is enlarged and has several problems, her arm bones are wrong, and her intestines and liver are on the outside.
Trisomy 18 is a genetic non-hereditary disorder. It happens at conception and is random. Every pregnancy has a .075% chance of having it happen. The 18chromosome didn't split correctly and as a result, our baby has three parts of 18 instead of two. This has caused her to develop abnormally in almost every aspect.
There is an 80-90% chance that she will not make it to her birthday; if she does, there is a 10% chance she would survive; if she does survive, because of the complications she has, almost no chance that we would take her home.
For us, terminating the pregnancy is not an option. I could carry to full term, or miscarry at any time.
Dave and I are not ok. We canceled our trip to Germany, Dave's mom is coming today, and we are trying to work through what we need to be doing. We are meeting with the pastor of our church this week, and planning to meet with a doctor to discuss out ultrasound results and more of what we can expect.
What we really need right now is love, supportive words, and tons and tons of prayers. The most difficult part of our situation is that the hard part hasn't come yet. Please pray for the strength of our baby, and for strength for Dave and I as we work through this time.