Spina bifida is a complex diagnosis with a wide variety of possible outcomes. It is a neural tube defect that occurs very early in a pregnancy, often times before the mother even knows she is pregnant. As the spine develops in utero, it closes like a zipper. A spina bifida results when something interferes with this closing and a portion of this “zipper” does not close.
The cause of spina bifida is not known. As a result, there is not a way to 100% prevent its occurrence. It has been shown that taking a multivitamin with 0.4 mg of folic acid prior to conception can help decrease the risk, but this is not a guarantee. Once the spina bifida has occurred, the only way to correct it is by having the baby undergo surgery to finish closing the ”zipper.”
Babies with spina bifida typically have surgery within the first 24-48 hours after birth, although there is an ongoing study currently researching potential fetal surgery for correction. As a general rule, the lower the site of the opening, the better the child’s functioning, although every kid is different & unique.
Here’s what the spine typically looks like:
A cervical opening would obviously be considered very high, whereas in contrast a sacral opening is very low. Basically, the nerves below the site of the opening can become damaged, which is why it’s usually considered better to have a lower opening-less nerve damage. It’s the same idea as with a spinal cord injury-the lower the better typically.
The main issues kids with spina bifida will face involve mobility & potty-training delays. These kids will have lots of physical/occupational therapy to help build muscle strength & stability; many kids with lower openings will be independent walkers, some may need small ankle braces, and some kids (especially with higher level openings) may decide to use wheelchairs to get around quicker. There are many techniques & medical advances to help these kids learn to potty-train as well.
The most important thing is that kids with spina bifida are just that-kids! Cognitive delays are very rare. These kids can grow up to be independent adults who go to college, get married, have careers & kids of their own. They are more like other kids than different-just with a few extra doctor’s appointments & some added challenges-but hey, who has it easy in life anyway?
Here are some great links to additional info on Spina Bifida:
- Spina Bifida Association of Kentucky: http://www.sbak.org
- Spina Bifida Association: http://www.spinabifidaassociation.org
- March of Dimes: http://www.marchofdimes.com
- Zoe’s first opportunity: http://www.firstgiving.com/zoelovell