One of the most important things I want to instill in Claire is a confidence that she is healthy and whole, just as she is. Spina Bifida, while not something we chose, has been part of her life from the beginning, and will always be part of her life. We can’t change the past, but we can focus on the present and the future, which are both bright, full of joy and discoveries and yes, also challenges and pain– just like everyone else’s life, too, with or without SB.
What frustrates me is, it seems the Spina Bifida Association doesn’t always share this mindset. I follow them on social media, and I regularly see these kinds of posts pop up in my feeds:
Folic Acid. I absolutely agree that it’s important that women of childbearing age take folic acid supplements to prevent neural tube defects like Spina Bifida to the extent possible. I say to the extent possible because there seems to be a mistaken idea among many, even, sadly, a doctor my husband once encountered (and possibly yelled at), who think that Spina Bifida is 100% preventable. The last time I researched, I found out about 60% of Spina Bifida cases could be attributed to folic acid deficiency. The SBA suggests 70%. This means there would still be hundreds of thousands of people in the world with SB, which is currently the number one permanently-disabling birth defect.
Still: folic acid deficiency is not the only cause of neural tube defects like SB, and I absolutely do not believe it caused Claire’s SB, because not only do I already eat a diet rich in folic acid (as a less-meatarian, I eat a diet full of leafy greens, citrus, and legumes), I took my prenatal supplements. There is simply no way I was folic acid deficient.
Organizations like the American Academy of Pediatrics (of which my husband is a member), the March of Dimes, and the American College of Obstetrics and Gynecology all do a great job working to raise awareness of the importance of folic acid supplementation to prevent neural tube defects. And I absolutely support that.
And I get that part of the job of advocacy organizations is prevention. The American Heart Association wants to help you have a healthy heart and avoid heart disease. Diabetes organizations want to prevent adult onset diabetes. Cancer organizations what to prevent cancers to the extent possible. But one thing that makes SB different than heart disease or diabetes is: there is no cure. There’s no developing it later in life to avoid. You’re either born with it, or you aren’t, and if you are, it’s not going anywhere because it’s part of you and always has been.
When I see the SBA constantly talking about preventing SB, it actually feels hurtful. It feels like they are telling moms like me it’s our fault if our kids have SB, and it feels like they are telling their primary audience, people who already HAVE SB, that things would be better if they weren’t the way they have been for their entire lives. People with SB and the people who love them don’t need to be constantly reminded about folic acid. Folic acid isn’t going to help us, and preventing SB isn’t something we need– SB is here, in our lives, and it’s not going anywhere.
We need access to medical care. We need more SB clinics that pull all of our various care providers into one team working to make care more efficient and harmonious. We need to know about early intervention options that can help people with SB reach their full potential for mobility and physical development, whatever that potential may be. We need funding. We need research. We need accessible buildings and playgrounds and vehicles. We need equal access to education and jobs. We need people to see folks with SB as whole and complete, not to be pitied or put on a pedestal. In short, we need our organization to advocate for the people who are already here, as they are.
October is Spina Bifida Awareness month. We need the SBA to work on visibility in a month dominated by other (still worthy) more visible causes like Breast Cancer Awareness.
So, as we head into October, I’m doing my part. I wish they were doing theirs.