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.
erniebufflo's south & west kitchen 
This is a great post. I know that SB is not something you (or probably any parent) would choose for his/her child. I know that it’s important to be aware of risk factors that may contribute to SB.
However, like you said, sometimes advocacy groups–organizations who are supposed to be advocating for people who have certain conditions–end up using “prevention” and “awareness” to the point of making the people they’re supposed to be advocating FOR feel alienated.
Claire has SB and no, she didn’t choose it. She lives a little bit (or maybe a lot different) of a life than most kids her age, or even people. But there is more to her than SB! She is dynamic, effervescent, amazing and deserves every opportunity blindly given to people without SB. She is not a source of inspiration (though how cool she is inspires me every day, quite frankly) that only serves to make people without SB feel better about themselves.
She’s a badass little girl. And I hope that organizations with a lot of money will use most of that money to help her be the biggest badass she can be.
TL;DR Claire is cool. #bufflolife
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Thanks, Georgeanne! I’m pretty sure Claire is a baby foodie. She’s always saying things like, “So, mama, how about a cookie?”
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I like the way Claire thinks. How ABOUT a cookie, mama.
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Another SB mamma and I discussed this last week. It is extremely frustrating and hurtful to suggest that ALL SB can be prevented with folic acid. It is also, as you mentioned, teaching these kids that there is something wrong with them that wouldn’t have been wrong if mom had done her job and taken what she was supposed to have taken. I think they have a great idea telling people that folic acid is a POSSIBLE CAUSE of SB, but they need to go about it differently. Good blog mamma!
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Gah! Yes. Thank you for writing this. I wish I felt more supported by SBA, I wish I felt like I wasn’t judged by them as a mother, but when I got to their site (with my wheelchair-using toddler beside me) and I see photos of healthy young woman offering up handfuls of folic acid supplements I just sit back and think– aren’t you leaving US out? The very people you’re supposed to be serving? I want the first thing you see when you access their website to be a smiling happy child with SB. I know awareness and prevention are important, but you can’t prevent my son and you can’t prevent Claire. They need support and services and acceptance. Leave the FA talks to the March of Dimes and the doctors. Besides, the prevention campaigns are often misleading and can cause uninformed readers to believe that ALL SB cases are preventable, which further isolates mothers.
I have had friends and family ask if they can donate to the SBA on our behalf and I always direct them to our local support group instead. I don’t know how much money the SBA uses for prevention campaigns so I prefer funds go to our group here where the money is used for social events and adaptive equipment for families.
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YES YES YES to the happy kid with SB being the face of the org/site/cause. I really really needed positive images of people with SB when we were first diagnosed.
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Yes!!! All of that folic acid stuff is crap. I seriously don’t even believe it’s 60%! I mean, look, the FDA has required MOST grains – cereal, bread, pasta, flour, corn meal, etc- to be fortified with folic acid for nearly 20 YEARS! If you eat a normal US diet even WITHOUT leafy greens, you won’t be folic acid deficient. Did you eat a bowl of cereal for breakfast? Congrats, you just had 200-400 mcg of folic acid- the daily dose!
I’m a registered nurse and until my baby was diagnosed with SB (after I had been taking prenatals for over 5 years and eat a very healthy diet) I thought it was 100% preventable. I am ashamed to admit, I even TOLD people it was! And they believed me, because I was a health professional.
My biggest fear is that someday someone will tell Calvin it’s my fault that he has SB. And it may very well be, but it’s NOT BECAUSE OF FREAKING FOLIC ACID!
Love this post, and love Cookie Monster. C is for cookie- and catheters :)
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A child’s diagnosis of having SB is NEVER a parent’s fault. I am so sorry you may have felt this way. I know your child will never blame you for his SB. I’m 46 now, living with (SB) Myelomeningocele, and I would be horrified if my mama thought it was ever “her” fault.” I hope she doesn’t. All I know is my mother’s undying devotion and love and the strength she must have had, and still does, to have reared such an obstreperous child as me!
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Aw, thank you so much for taking the time to write this. That was really sweet of you. Your mom sounds awesome. :-)
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Lori Ann– I am sure your mom knows, but it wouldn’t hurt to tell her. Mamas tend to be a mushy sort who love to hear praise from our children– mine just figured out how to say “wuv you” and I’m over the moon. Also: I’m a giant word nerd, and officially love you for using such a great one as “obstreperous.”
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Oh my goodness! My thought exactly! I about fell through the floor when I saw this in the Wednesday Link-up for ARWB. I’m an adult with SB and I live in NWA. I completely agree with this!
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That’s really interesting and I certainly wasn’t “aware” how many cases were not due to folic acid deficiency.
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Reblogged this on Joys Unspeakable.
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I’m pretty sure taking more folic acid would not have helped us. I have a question for you: Do both of your twins have SB? I have a set of (now-eleven-year-old) twins, too! Our girl twin doesn’t have SB and our boy twin has a vary rare (at least that’s what we were told!) form of SB which is Tethered Cord Syndrome. Possibly due to late treatment (we had an old doc who didn’t recommend fixing the hole in his back) to fix the tether when he was almost three, many difficulties affect his life, such as sensory issues, intellectual disability, chronic constipation, a seizure disorder, and autistic tendencies to name a few. Honestly, we have no connection to SBA, but the possible assumption (by the public in general and medical opinion specifically) that our son’s SB was caused by me not taking enough folic acid (or not having a healthy diet, etc) always has me explaining to everyone that he has a VERY healthy twin sister. And sometimes in my defense I also add that I am a mother of five children who stays at home after choosing to leave the classroom (I am a college graduate, Gig’Em Texas Aggies, and a Certified Teacher!) going on 19 years ago. In my reality, these ad.s just add stigma to an already difficult situation.
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Mindy– just Claire has SB. Etta is completely typical, health-wise, as far as we know. We are currently working on genetic testing to find out if either girl inherited my heart defect, but only one twin has SB. It definitely seems to me that if I was that deficient in FA, they’d both have some sort of neural tube issues, since it was the exact same pregnancy, you know? But I know a couple sets of twins and even a set of triplets in which only one child has SB.
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Okay! Pregnancies involving multiples add another dimension to the folic acid debate. I, too, feel like both my babies would have been affected if we were needing more folic acid. Humph. Thanks! -Just wish SBA would stop adding stigma associated with their folic acid campaigns…
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I love this. And I have been saying this exact same thing for 16 years. Posting it all over Spina Bifida Connection.
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Definitely true I wasn’t aware how frustrated with the talk of folic acid preventing SB. I took folic acid and my daughter was born with SB due to me unknowingly having the MTHFR gene (no known family history before me).
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Shortly after our daughter was born(Ella is 7) we received our first SBA newsletter and I was SO insulted and hurt by it’s content. It too focused on the Folic Acid deficiency and at that time I took full responsibility for her condition. It also listed statistics like “1 out of 1500 babies born have SB”. Well our Ella was that ONE and it was so hurtful and heartbreaking for me. I was so angry that I wrote a nasty letter to the SB President and let them have it. Reminding them that the people they were sending this to were/are those caring for, and living with the very condition they were so set on preventing. I’m all for preventing SB from existing…I’d give my life if that were possible, but it’s not and EL and 1000’s of other people have to live with the disabilities associated with it FOREVER!! I appreciate you saying this out loud. In fact this is one of the best written parent perspectives I’ve read in a long time. Thank You!!!
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Very good post! Folic acid is an important piece of the prevention story. But far more important to families is the practical support they should expect from organizations like SBAA. And depending on where we’re at on the parent continuum, we probably have different priorities.
Mine is jobs! As the mother of a young SB lady in her mid-20s, huge resources MUST be brought to bear on advocating for jobs and job training. This is absolutely imperative. Our children are bright, ambitious, educated, relevant and dedicated. Yet they’re routinely overlooked in the workplace. Joining the whopping two-thirds of disabled Americans who can’t find employment. This must change so that your little Claire and others can roll into meaningful jobs at will. And the SBAA is better positioned than most to lead this change.
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This is a very insightful article. I do hope that the SBA will acknowledge it and, perhaps, update their information that is currently being erroneously released to the public about SB. I agree with every point you made and I thank you for giving the public the REAL truth behind having SB. God Bless you, …Lori (living with SB, Myelomeningocele since 1968.
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Yes, yes, yes! All the folic in the universe will not make one dot of difference to my life – which is actually quite ok, thanks.
I’m going to “spam” this blog all over the relevant social media sites I’m involved in.
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I understand what you are writing about. SBA has two parts in its mission, making sure to improve the quality of life and, secondly, advocating for improving the FA status of women. While I know that the care is absolutely not ideal in the US (SBA is running a programme with CDC to improve this care in pediatrics and for adults — where care is even more needed), some populations (such as hispanics) are underserved with prevention campaigns (masa flour is NOT fortified with FA, for example). Especially with supplements, constant reminders are very needed.
Please keep in mind that 25 October is World Spina Bifida and Hydrocephalus Day. Shout out that care is needed. Work with your SBA chapter on documenting the situation in Arkansas and advocate for the changes you envision. Raise your concern within the SBA. SBA is you, I guess (I am not :))
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Thank you! Thank you! Thank you! I will admit I still struggle with feelings of guilt. That some how this was my fault or I could have prevented it. When I told my dad we were expecting a baby one of the first things out of his mouth was make sure you’re taking your folic acid. I didnt think that much of it just like when he tells me to make sure I’m taking my vitamin C when I tell him I’m catching a cold. But I thought I was fine, I was taking a prenatal. Then after we received our sons diagnosis my dads words haunted me because everything I found on the internet was how if I had just taken my folic acid this wouldn’t have happened. My doctors were great, and I guess they picked up the horror on my face because they assured me multiple times that it wasn’t my fault. That sometimes these things just happen. I followed SBA for a while when my son was a baby, but I never left their site feeling encouraged or better about the situation. I still had feelings of guilt. My son is 3 and is a rockstar. He’s a good kid, he’s happy, and he lives his life just like any other 3 yr old. He just has Spina Bifida. And now I have found myself following blogs of people like you, moms who I can relate to and feel encouraged by. Not sites who push ideas on how to prevent this life that we are already living.
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Emily– I am so so so thankful for people blogging about life with SB. When we first got the diagnosis and I went looking for information, I just needed some images of what our life was going to look like. I didn’t find that on medical sites or the SBA. I did find it from moms blogging about their kids. And just seeing such a wide range of happy, healthy kids with all manner of mobility types, it gave me so much hope. It’s a major reason I want to continue to write about life with SB, life with twins, life as a mom, because I want people to know that life is crazy beautiful and hard, and they can rock it.
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Well please don’t stop anytime soon! It was people like you who changed my mindset about the whole thing. I was good at smiling and saying the right things but I was terrified on the inside and didn’t know if things really were going to be ok. Having a community of moms to connect to really has made a world of difference. I may just have to take up this whole blogging thing myself. :)
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I say go for it! I started blogging back in 2008 because my husband was tired of being the sole audience for what some may call “rants,” and I more generously call “monologs.” So, he can be thanked or blamed accordingly for the existence of this site!
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There is not a day that goes by that I am not immensely thankful for my littler sister with SB and the opportunity that her defect has given my family. However, there isn’t a day that goes by that I am not intensely terrified for the future of my family and the future of my little sister. Most of the comments above are from mothers of these children, but I am speaking as a sibling.
It’s interesting how much I care about my sister and the Spinda Bifida community. I am wholly active in the sibling group at the national level and I strive to work with my Friends that are effected by spina Bifida. I love my sister and I love the SB community.
I am disheartened by this post. How selfish can we be as a team, a support system? I am thankful for my life with Spina Bififa, but I would wish it upon no one. How can we not put a tremendous amount of effort into the prevention of Spina Bifida. I wish my sister could join a dance studio, I wish she could play hockey with my family. But she can’t, and no middle school girl should ever be denied her opportunity to run amoungst a group of her closest friends. We should work to make the lives of those effected by SB great, but we should focus on the prevention and insurance for the future. I am proud of my sister, I am proud of the SB community, and I am immensely proud of the nation SBA.
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I don’t really see how my arguments here could be construed as selfish. I just question who the SBA’s primary audience is, and what their message is to that audience. Do you really think there are people visiting their site or Facebook page who don’t already have some sort of personal connection to SB, who are ignorant of the possibility that folic acid can prevent neural tube defects?
Also, I sure hope your family can help your sister get into adaptive activities like sled hockey or accessible dance classes. We even have special needs dance classes in my small community!
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I’m not a SB mom, but I feel like this message rings true for a lot of parents. Andrew has autism and I’m constantly inundated with all of the things I could have done that might have made a difference in his diagnosis. But it might not have. I agree that prevention, when possible, is the best case scenario, but I’m tired of being made to feel like I failed him before he was even born.
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I LOVE this article….it is sooo true!!
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