It's Spina Bifida Awareness Month--yay!
Spina Bifida is a neural tube defect that happens during the first month after conception. There are several forms with big, scary sounding names that describe the defect, but they don't really tell us non-doctors a whole lot. The main things to know are:
* The exact cause(s) are not known. Quite a few correlations have been identified, and there seem to be both environmental and genetic factors involved. But the details are still being studied. I read about some research that indicates that the diet your grandparents ate can impact your odds of having a child with SB.
* Experts talk about folic acid being able to reduce the risk of having a baby with a neural tube defect. It does, by about 70% according to some research, but it doesn't eliminate the risk entirely. Some women aren't able to metabolize it efficiently and there are medications that seem to interfere with the metabolism of folic acid. That said, FA is easy to add to your diet. If you're female and of child-bearing age, get at least 0.4mg (that's 400 micrograms) daily. Ten times that if you have a family history of neural tube defects.
* Every person with Spina Bifida is just that: a person. They do things differently than able-bodied people sometimes, but they really are just people. Like able-bodied people, everyone with SB is different. Even people with the exact same lesion level may have different challenges.
* There is no cure. There are surgeries (a LOT of surgeries), hours of therapy, doctor visit after doctor visit after doctor visit, tests, evaluations, meetings, medications, procedures, equipment, braces, skills, plans, etc that help a person to be productive in spite of their disability, but none of it cures the nerve damage that happened due to the original lesion or continues to happen due to tethering of the spinal cord. Maybe that will change in the future with stem cell therapies and other medical advancements, but right now, there is no cure.
* Like most disabilities, Spina Bifida is not contagious. It's not "cooties" and your kid won't suddenly stop being able to walk just because my kid uses a wheelchair and they're in class together. (Important side note: Even if your kid did need to start using a wheelchair, they would be no less awesome than they were before.)
* Finally, SB is the most common permanently disabling birth defect in the US. It affects a growing community of some 166,000 people in the US and you're likely to come across some of them at church, at school, or even at the grocery store. So be aware!
