Meet Makenna – Spina Bifida Clinic at St. Louis Children’s Hospital

When we first got the news from our local hospital, it was really scary. The maternal fetal medicine doctor said your daughter has Spina Bifida. We had some testing done at our local doctor and we got some test results back that indicated a small chance that Makenna may have Spina Bifida. So we wanted to get a second opinion and learn more about what that meant. Spina Bifida is basically children are born with portions of their spinal cord and the nerves and the covering of those nerves outside of their skin. We’re three hours from St. Louis Children’s Hospital. We looked around they actually have a clinic here that just deals with Spina Bifida. It was how can we help you, come out, I’d like to do a visit next week, if that’s too late and you want to come out tomorrow, you can come out tomorrow. She doesn’t breathe consistently. That time was, you know, defiantly precious to know and not have to sit around for three or four weeks to wait and wonder and stress. I think that’s very comforting for these families, knowing that they got people in there to support them through these moments to basically share the burden. You could not have asked for more caring people and those caring people helped you deal with the uncertainty and to tell you it is alright and everything you were feeling was completely normal. It let me sleep at night again. Meredith coined them the dream team, just to know that we would have these resources to be able to utilize and come back to and work through it. It really changed things for us. Makenna was born and the doctors came by and said “yeah, we’re gonna go in tomorrow and have a procedure and basically have her back sewn shut.” The second thing that is of concern from the neurosurgical standpoint is hydrocephalus. They basically have to do what’s called a shunt procedure. So she had a second surgery done and for most of the experience it was just making sure that Makenna got through those two procedures so then she could go home and start her life with us. Fifty years ago Spina Bifida was a death sentence. Nowadays, Spina Bifida kids live a normal age expectancy, have children, have families. It’s not a dire situation by any means. I mean Makenna is amazingly happy, a normal kid running around. So definitely there is hope.

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