the #1 thing I want you to know about Spina Bifida isn’t about folic acid

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It’s apparently folic acid awareness week. Which means I’m on my soapbox again.

It started when I saw the posts from the Spina Bifida Association on Facebook, again letting their audience of people who already have SB in their lives know that SB can sometimes be prevented by making sure women of childbearing age are getting enough folic acid even before they become pregnant, as neural tube defects happen so early in a pregnancy that by the time you miss your period and start taking your prenatal vitamins, it’s too late. But I have a feeling if you’re following the SBA on Facebook, you already know that.

Then I picked up a copy of Savvy, a local parenting magazine, on the table at my daughter’s developmental preschool. SPECIAL NEEDS ISSUE, the cover proclaimed. I’m considering switching to in-home therapy for Claire if I can find it, so I grabbed a copy. My heart sank a little when I turned to see a piece called “Vitamin for Life” with a picture of a smiling mom and her smiling daughter who was using a wheelchair. I immediately knew what the article would be about: dangblasted folic acid. I’m not bashing the local mom interviewed in the piece, because I have no idea if the only thing she chose to talk about was folic acid, or if that’s just the angle the writer chose to focus on, because I really hope that the local president of the Spina Bifida Support Group would realize that folic acid can’t prevent all cases of SB. She herself mentions that she took her prenatal vitamins and still wound up with a daughter with Spina Bifida, and I did too. I simply do not believe that a folic acid deficiency caused Claire to have SB.

What irks me is, often the ONLY thing people know about SB is that it’s the reason you’re supposed to take folic acid. If I’m given a platform to help people know more about my daughter’s particular needs, folic acid isn’t something I’m going to focus on. Because folic acid isn’t going to help any of the kids who are here now, whose SB isn’t going to go away, no matter how many vitamins they take.

What I want you to know about SB is it’s not the end of the world. Far from it. Yes, Claire has Spina Bifida. Yes, it sometimes affects our lives in big and small ways. But what the “Vitamin for Life” idea misses is that we already have a rich, beautiful, wonderful life. If you’ve just gotten a fetal diagnosis, I want you to find my writing, see my pictures, and find hope. If you see a kid like mine, with braces on her legs, or using crutches, a walker, or a wheelchair, I want you to know you don’t have to feel pity or regret or sadness– because we don’t. We’re too busy going places.

By all means, doctors and public health advocates should continue to make sure that women of childbearing age take their folic acid. But I’m not interested in using my beautiful child to scare folks into doing it. When you see her gorgeous face, I would much rather you see a happy, whole person than a reminder to pop a vitamin lest your kid wind up like her.

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9 thoughts on “the #1 thing I want you to know about Spina Bifida isn’t about folic acid

  1. Dear, Sarah, thank you very much for your posts, they really give me hope, that life of our family will be rich of happiness and new adventures. And for sure, Clare’s beautiful face give me much joy and hope, that my son will as beautiful and happy as she is!

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  2. Beautifully written. I went back and read more of your posts, too after my very good friend (whose older sister has spina bifida) shared this post. I agree with your thoughts and appreciate your sharing your family story to help others. And finally…my daughter is named Etta, too and I think is around the same age as your girls. She is named after my grandfather’s aunt who helped take care of me with my great-grandmother when I was little on the says my mom worked. :)

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  3. I’m so glad I came across this post, mainly because (I am embarrassed to admit this) I do not know much about the cause of spina bifida, I only know about the awesome things my students with the disease can do, just like all other students in my class. Your daughter is beautiful, and I’m sure she will have tons of great accomplishments for you to blog about in years to come!

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  4. Beautifully stated. I admittedly don’t know much about SB, but as an Autistic woman, I understand what it is like to be used as a “warning” or “scare tactic” when I am so much more than that.

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  5. Yep! I took my vitamins before I was pregnant (I was still breastfeeding at the time) and during pregnancy and still had a child with spin bifida. It isn’t a pity sentence at all and I get rather irritated when people comment how “happy” he is.. as if his life should be miserable because he can’t do things the same way others can. .

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