October is Spina Bifida Awareness month! I wanted to share a really cute blog I’ve come across. This mom is featuring the Faces of Spina Bifida, where she profiles a couple kids each day who have SB. As you can see, they all are happy, healthy kids who just happen to also have this condition. Reading all these blogs the last couple months has really helped me to realize that we can do this and it’s not as scary as we thought it was going to be.
Since this is awareness month, there’s also been a lot of attention to the fetal surgery. This year marks the 12-year anniversary of the famous photograph where the fetus is holding the hand of the surgeon. I think it’s great that it’s drawing attention and awareness to Spina Bifida. I certainly hadn’t been familiar with this until we got Leah’s diagnosis. We were given the option to look into fetal surgery and decided it wasn’t for us. We’ve had a lot of people ask about it, so I wanted to share what I know and why we decided not to go through with it.
It’s actually very revolutionary technology where a neurosurgeon operates on the baby in utero. He basically performs a c-section on the mom, who is under general anesthesia, repairs the baby’s spine, and then closes mom back up and she stays pregnant. The surgery is usually done while the mother is 18-24 weeks pregnant, so we did have a few weeks to decide whether this was something we wanted to do. If we were interested, we would have been referred to one of 3 hospitals in the country currently performing this operation – Vanderbilt in Nashville, Children’s Hospital of Philadelphia, or UC – San Francisco. That would have meant several weeks in one of those cities just determining if we qualified for surgery, then we would have had the surgery, and I would come home after several more weeks, where I could be monitored here by my doctors.
The benefits are that the baby gets surgery when she’s very young, and there is less time for the opening to be exposed to amniotic fluid. The results so far show that fewer nerves are damaged and in some cases the Chiari malformation (the base of the brain) is able to be repositioned back into it rightful place in the brain. But it does not cure Spina Bifida. And that’s why we had a hard time justifying the risks to me and to our baby. There is an increased chance that she would be premature, which carries its own set of challenges. The uterus isn’t meant to be cut open at just 20 weeks pregnant. And I would be at a higher risk of uterine rupture and premature birth with future children. If this was a life-saving surgery, I would feel differently. If Leah was our last child and we decided we didn’t want any more kids, I would feel differently. If this could cure her Spina Bifida, I would feel differently.
This was OUR choice, this was what was right for us. That doesn’t mean I don’t think other people shouldn’t do it. It is the right thing for lots of other families. And it also doesn’t mean we’ll be risk averse to all new technologies that could help Leah in the future. I'm glad we heard about it and talked to several doctors who has just been out in San Francisco at a conference on the surgery. We just decided it's not for us.
We're pretty much in the final home stretch. My doctors have gone from telling me to call when I have 4 contractions in an hour... to 6... to now when they're 5-7 minutes apart. That means I'm getting close!! It's hard to believe that it's now only 3 weeks away (at most) when it feels like we just found out. We're both feeling a lot of emotions, but I think most of all we just can't wait to meet our baby girl.
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