Tuesday, April 21, 2015

choosing a hospital

After returning from our fetal surgery evaluation day with Vanderbilt, J.B. and I elected to take a few days to detox from all the information. But it was less than a week before we received a call letting us know that we needed to select a delivery hospital pretty quickly.

While we loved having Jake locally at Huntsville Hospital, Eliza was going to need a team of pediatric neurosurgeons that would only be available if we went to a children's hospital. Our two choices were essentially equal distances away - Vanderbilt Children's or Children's of Alabama. While we aren't committed forever, there is more than just delivery to consider. Once Eliza was born and even brought home, she would continue to be a spina bifida patient at whichever hospital clinic we choose. Ideally, we'd like to use the same clinic for delivery and pediatric care.

Due to some medical complications that Jake had during his first year, we've had previous experience with both hospitals. And even though we'd had a great experience with the team at Vanderbilt during the evaluation, both of our guts were definitely leaning towards a delivery at Children's of Alabama.
At this point, however, I had yet to speak with anyone there about their spina bifida program. 

After days of voice mails and being given different contacts and phone numbers, I was finally able to speak with the appropriate contacts at Children's of Alabama. And let me be honest, I was incredibly unimpressed. Maybe I caught them at a bad time, but everyone I spoke to seemed bored, unorganized and less efficient that I'd like for them to be. Based on their scheduling, I think its fair to say that their team also sees less spina bifida patients that the team at Vanderbilt. 
Ultimately, I was pretty uncomfortable with the idea of using them for Eliza's care. 

How funny, to have a gut feeling about one place for one child, and then to have the roles reversed for the other. Silver lining? It was an easy decision! Vanderbilt has a great program that has impressed us since day one. So we're thankful to have that team as our go-to. 

When I called to let them know of our decision, they were so happy to have us. We have a follow up appointment scheduled towards the end of May to see how Eliza has progressed. From there, we hope to have a little more concrete delivery plan for this summer. 

It's nice to have another (not so) tough decision under our belts!

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!