“…extreme disability is not synonymous with unhappiness and we are only at the beginning of finding ways of developing the capabilities of these patients….”- Dr. Robert Zachary, pioneer of spina bifida care
It’s October and among other health causes, it’s Spina Bifida Awareness Month. Yes, I know folic acid. But only about 50% of spina bifida cases can be attriubted to folic acid deficiency. There’s so much talk about prevention of neural tube defects, but very little about living well with spina bifida. The medical community still views spina bifida largely as a horrible burden to children and their families rather than a challenge to be overcome.
October also Breast Cancer Awareness Month and the campaigns I see for breast cancer involve all kinds of empowering slogans and marketing- pink and courageous, “fight like a girl”. What if we were to approach spina bifida as a challenge, not a death sentence? So I guess here is what I want people to be aware of this month (and every other month for that matter):
- Unless other serious defects are present, a baby with spina bifida will not be a vegetable. He will probably have average intelligence and with some adaptations can get out and do lots of things. We live in era of wheelchair basketball and therapeutic horseback riding. Your kid has lots of opportunities.
- Research on what it means to live a life with full treatment of spina bifida is relatively new since it has only been in the last 30-35 years that doctors have been routinely treating cases of spina bifida. Before that, babies with spina bifida were deemed a lost cause. In other words, there’s a lot we still don’t fully understand about the treatment of spina bifida and plenty to still find out.
- Spina bifida is really a spectrum. What will your child be like? Well she may have any of the associated problems in varying levels. Some kids walk, some don’t, some have a shunt, some don’t, some don’t need catherization, some do, and on and on…
- If your child has a spina bifida, you as the parent will have a huge impact on how your child views himself and his condition. If this is a source of shame or embarrassment for you, your kid will learn to think of it the same way. If you approach it as a variation that requires some adaptations and that your child is still capable of a normal life, your child will see that too.
Yes, we want to prevent neural tube defects, but when we start talking about awareness, I think that it’s important that we start becoming aware of the capabilities of individuals with disabilities. Having a disabled child is not a fate worse than death. I guess what I’m advocating is an awareness of determination and joy that can accompany having a child with spina bifida.