Tuesday, April 14, 2015

Vanderbilt surgical evaluation day

Yesterday was finally our full evaluation day with the Vanderbilt Fetal Spina Bifida Center. 

Since we had to be at the hospital very early Monday morning, J.B. and I traveled up to Tennessee Sunday afternoon and stayed in a nearby hotel. I'm so thankful we decided to do that because the day was more exhausting than I'd ever imagined. 

The day contained tons of fast paced meetings and testing. We began by meeting the clinic's main ultra-sound technician and had a two hour scan. Then we met with pediatric neurosurgeons, maternal surgeons, genetic counselors, neonatal docs, etc etc. A lot of the day was a discussion of "what ifs". They each talked to us about both of the options for spina bifida and answered any questions. It wasn't until the end of the day that we actually got to Eliza's specifics. Spina bifida is one of those conditions that varies drastically with each case so we were really anxious to hear what they thought. When J.B. and I began the day, we were very much on the fence about the surgery (based on all the risks) but if we were told that she would really benefit from the surgery, we were prepared to do whatever we needed to make it happen.

Unfortunately, that's not really what we heard.
Eliza's lesion is higher that we were originally told by the local specialist. While in Dr. Gonzalez's office, they thought they saw her opening at L3. But this clinic found it to be at T12, four vertebrates higher. Remember, the higher the lesion, the more of the body that is effected below it. I can't even describe how disheartening this news was because we knew it could create so many more difficulties for her. In regards to the surgery, this basically limited any mobility benefits she might have. With a lower opening, maybe she would walk someday. But with this higher opening, even with the fetal surgery, it wouldn't be likely.
The lesion was also very wide. The issue with that in regards to fetal surgery is that it would take a longer amount of time to close properly. They've discovered that they longer they are operation, the greater the chance of preterm labor. For a mom to go into labor immediately, or even in the couple of weeks that follow the surgery, would be detrimental for the baby. So basically the longer the fetal surgery, the riskier it is for her. Eliza's spine would take 3-4 times the length of time that most of these procedures take.
There was also concern about the placement of her umbilical cord that would make the placenta and cord very fragile during surgery. If an issue were to occur there, it could have also have dire consequences. In the end, we weren't totally declined by the surgeons, but they did make it clear that they were uncomfortable with the thought of the elevated risks and decreased benefits. Remember, there is no cure for spina bifida. And the tradition post-natal closure poses very little risk at all. In the end, J.B. and I agreed with the surgeons. It was just too risky for our girl.

I'm thankful that this team is very honest and open with their patients. They never once pushed any decision on us for their own benefit or research.

From here, I think J.B. and I just need some time to take all this new information in. We have a great peace about our decision to wait on the surgery. And now we have some idea of what the next few months will look like. Lots of appointments, lots of checking in on Eliza's condition, choosing a children's hospital for her delivery, and trying to be a normal expectant couple. 

Fingers crossed for a full term, August baby!

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