Last week I had an AFP test to screen for potential birth defects in the baby. On Monday we found out the test came back positive and we found out today that the results showed a high risk of problems with the baby. They scheduled an ultrasound and genetic counseling as our next steps and we did that this morning.
The ultrasound did not go well - there are multiple abnormalities found in the baby that point to severe Down syndrome. The Dr. evaluating the ultrasound, the Genetic Specialist and the OB/GYN all said they felt the pregnancy was not viable. There is a lot of fluid throughout the baby’s body - surrounding the brain, abdomen, behind the neck, lungs, around the heart, in the arms, etc. The intestines look more like bone than fluid in the ultrasound and there is very low amniotic fluid - they feel the kidneys may not be working correctly. They were able to detect a heartbeat but not able to take a close enough look at it. They detected some cysts in the fluid behind the neck and shorter femurs than normal. All of these factors lead them to believe that the baby has Down syndrome but without an amnio they can't be certain. They are leaving that decision up to us. This isn’t the type of Down syndrome that we are accustomed to seeing, it is far more severe and none of the doctors have seen a baby in this situation survive. We have no plans to terminate the pregnancy, so the advantage to doing an amnio is that we would gain more info. about the pregnancy - if it is a syndrome that could affect future pregnancies or if this is just a random occurrence. We are praying, and seeking prayer, about the decision to have an amnio. We have an appointment Mon. afternoon for another ultrasound and if we want to have the amnio we can do it then. There are risks with any medical procedure, but since the baby is so sick already the amnio has increased risks.
The OB/GYN said that in most cases they don't see the baby at this state. Typically the mother comes in for a prenatal visit and when they aren't able to detect a heartbeat they look further and determine the baby had these symptoms and passed away. They expect that will happen with our baby, not tomorrow or 2 months from now, but sometime in the next few weeks unless God has other plans.
We know that God is powerful and can do amazing things. If His will is to bring this baby to term it will be an amazing testimony. Right now, Jose' and I are feeling overwhelmed, pretty discouraged and numb. We appreciate your continued prayers for us, the baby and God's will on how we should proceed. Today has been overwhelming, so we are going to take it easy tonight and try to relax as much as possible.
Thank you so much for your prayers - we have been feeling them all day and they have been a source of comfort and strength.
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5 weeks ago