XP: update on baby boy

74dragonfly · July 2013

Today was a LOOOOOONG day. Left house at 8:30, home around 4pm.

The baby does have spina bifida. There are positives and negatives to his particular situation. He has a hole in his spinal column at the base, which is the best spot to have it, the lower the better. Also his hole has been closed over by skin, which is rare. This means his spine is protected from amniotic fluid. Both these things means this is a mild case. Bad news: they suspect nerves are fused to the base of his spine. Right now he is fine, great movement, brain looks good, bones look good etc. But as he grows he may not grow normally. They just don't know.

Because his hole is covered they theorize no spinal fluid escaped which is why he passed the neural tube defect testing (AFP) in the 1st trimester screening process.

I had an amnio done today so they can check the amniotic fluid for a few things. I go next week for a fetal MRI. we also are trying to get in to meet a pediatric neursurgeon. Most babies with SP need surgery with 48 hours of birth to close the hole. Since his closed and protected we may not need surgery until he is a month or two old, which is better. But the big question is what the impact is of this possible nerve issue. The surgeon can tell us these things.

We are drained. I barely slept last night. The amnio hurt so much. I feel a tad more hopeful but also worried what may occur as he grows in-utero.

I need lots of prayers and good wishes. This is going to be a long rough road. They still think a week 39 c section is fine. Apparently all SP babies are c section due to spine.

I really appreciate your prayers. My baby moves so much, he is moving all the time. I feel like he is telling me to hang in there.

Thank you for thinking of us!

Junebug060609 · July 2013

I am so glad he looks to have a mild case. I am glad he seems to have so many things in his favor.

Big hugs as you go through this and best wishes that he continues to do well.

laurding · July 2013

Sounds like great news! I will be continuing to send good vibes!

Jenny952 · July 2013

Hi, I just replied to your earlier post. My DD has SB as well. Feel free to PM me if you want to chat. I know exactly what you're going through. This is the worst of it, what you're going through right now. You'll come through it, you'll breathe (and sleep) again, I promise! Hang in there, mama!