Fetal Surgery Info

What is Spina Bifida? What did the in utero surgery actually do? And if you didn't have that what would have happened when he was born?

I feel like Evan is on the more functional side of the spectrum. Do you believe that was because of the in-utero surgery you had?

Evan's form of Spina Bifida, myelomeningocele, is the most severe form of Spina Bifida. It means that there was an opening in his spine and back, leaving his spinal cord protruding and exposed to amniotic fluid and being touched—potential causes of nerve damage.

I remember the doctor showing us on the ultrasound how the upper vertebrae looked like this: ^^^^^. At a certain point they inverted to this: vvvvv which is where the opening in Evan's back started. The point where the hole starts is what we call his lesion level, which, for Evan, is L3/L4. How well a person with Spina Bifida can function is typically related to lesion level because nerves from that point down are affected. Lower levels are good. Less nerves affected. L3/L4 is moderate, I'd say.

On diagnosis day, the doctor showed us a chart like these and told us that Evan would probably need help walking, and was on the edge of needing a wheelchair or not. Then he gave us 3 options:

1. Post natal surgery: The most common option. When my child is born he would be taken off pretty quickly to have surgery to close the hole in his back. 

2. Fetal surgery: Newer, more risky option. Open me up and close the hole in baby's back between 21 and 26 weeks of pregnancy, then close me up and try to keep me pregnant.

3. Terminate the pregnancy (out of the question for us)

The obvious and plentiful risks associated with fetal surgery make it not the right choice for every family. There were a few predicted benefits, however, that drew us in. In closing the hole earlier you cover the spinal cord and protect the nerves earlier. That's obviously a good thing. From the study that was done to test the effectiveness of fetal surgery, it showed that people who had fetal surgery performed, on average, two levels lower than their lesion. So Evan could potentially function more like L5/S1. And I think that's what happened. Referring to the charts above, rather than needing a wheelchair and long braces, Evan has short braces and cables for his abnormal feet positioning. He's definitely functioning on the less severe side of the spectrum, and it makes sense to me that fetal surgery made the difference.