The Next Day - consult with CHOP

The day after the ultrasound was a flurry of phone calls. While at work, I got a call from the coordinator at CHOP for Fetal Diagnosis and Treatment. She had spoken with my doctor, who just got the notes on my ultrasound results from the previous day. I remember her asking me what info I had gotten regarding the results. I told her I wasn't entirely sure, other than there was a possibility of brain, spine and heart defects. She asked me if the doctor had mentioned anything about Spina Bifida.

I said no.

She went on to tell me that the findings pointed to Spina Bidifa, which is where the spine doesn't form correctly. There are different types, but all signs were pointing to the most extreme case. The spinal cord of our baby was exposed to the amniotic fluid, which was causing the high AFP.  The spine deformation was also pulling the brain down, causing the empty space in the brain.

Once again, my head was spinning.

As she went on, she explained that in cases where Spina Bifida is thought to be the diagnosis, they schedule a two day evaluation where Matt and I could come to CHOP, and they would run all the necessary tests. She told me they have a really great department just focusing on Spina Bifida there. The two day evaluation would be all the same tests I expected to have: the ultrasound, the fetal echocardiogram, and the fetal MRI. All of these would diagnose the Spina Bifida, and the severity. She also told me that pending these tests, I could be eligible for in utero surgery, which will allow them to close up the spine.

I accepted my fate once again and scheduled the first day of the evaluation, which was all set for July 2nd.

My OB called not long after, and asked me if I had spoken with the woman from CHOP. She also told me she received the notes from the ultrasound, and asked me why I declined the Amniocentesis. I explained to her that I felt I was pushed to not have it. She was blown away, and she urged me to get the amniocentesis, as it would actually diagnose the Spina Bifida.

So I scheduled an amniocentesis for the very next day.