Better explanation from Jeff: Jeff actually talked to the doctor today
Results of the CGH came back normal - meaning this shouldn't effect future pregnancies, but also doesn't let us know what caused Samuel's abnormalities. It's extremely rare to have these abnormalities and not have and identifiable syndrome. The perinatologist mentioned 3C Syndrome - (Cerebellar, Craniofacial and Cardiac abnormalities) but they can't confirm that. There have only been 25 babies identified with this since 1987. The babies genes and our genes are totally normal and they don't know what caused the spontaneous structural malformation - it may be a syndrome that hasn't been identified yet. Once abnormality can be by chance, but three leads them to believe that there is some sort of syndrome that caused it. Once he is born, they can do more testing to see what it is, but this does not change the prognosis. Our next step is to meet with a neonatologist who will take another look at Samuel and advise us on how to treat the pregnancy. The cleft lip and palette will need to be addressed right away because of feeding issues, but nothing can be done with the brain - which is the major issue. They will let us know more details about delivery, what surgeries will be needed, etc.
Kristy's notes:
Well, we got the results today. And... it is not genetic and Baylor was unable to identify the problem. This means that it is not related to either Jeff or I, but whatever the problem is-it is so rare that it can't be identified. So, now this still leaves us with so many questions and unknowns. I think that is what drives me crazy. I have some peace knowing that we have a potential to have more kids. At the same time, I just wish I knew what was wrong with my baby. This means that it was completely spontaneous. The odds of this happening are unreal. Our next step is to see a neonatalogist.
FRESH
Yep. This is an Octopus.
Ultrasound Picture
Samuel 21 weeks
3 comments:
Well, that's good that you have the news it's not genetic and that you can approach having more children. Have really been thinking of you two, praying for the next days, weeks, and all you need. Thanks, Kristy, for keeping us posted. Love, dave and mary
I know it's hard to not have all of the answers - and to have a lot of questions, and hard as this is, God has told us that it is not for us to know or understand His ways, as His ways are so much higher than our ways. We may not understand what's going on or what He is doing, but how beautiful to know that He does, and that's what matters. Loveyouguys!!! Ang
Kristy, thanks so much for writing out all the information and for blogging about your thoughts. If it's any encouragement I have found your thoughts to be a great encouragement to me the past two weeks. Amy and I are praying for all of you.
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