But Didn’t You Take Your Folic Acid?

The Spina Bifida Association of America and other organizations around the world work to help prevent neural tube defects in babies by researching causes and raising awareness. They’ve done amazing things to lower the number of cases of spina bifida. Fewer and fewer babies have to endure what I’ve endured in my lifetime. There is a problem though. The push for folic acid is a good one, but not a 100% fix-it cure. Women are told that as long as they take their folic acid, things will turn out perfect and baby will be fine. That isn’t always true, and with the folic acid campaign being so prevalent, outsiders tend to judge and look down upon parents whose children have SB without just cause. I posted a question on a forum I’m a part of, asking if I could borrow pictures of those children whose mothers were taking folic acid at the time they were conceived. The first 24 pictures are the responses I received in less than 12 hours…the rest were added by request from mothers who wanted their voices heard as well. I will continue to add until the requests stop coming.

In less than 12 hours, I got 24 pictures of children whose mothers took their folic acid and they fell between the cracks. I’m still receiving requests for add ons. There has to be another cause, and we need to find it. All of these women did everything they knew to do. That means there has to be another explanation, and we don’t know everything there is to know. I’ve heard far too many stories of even doctors assuming mothers didn’t take their folic acid because enough research isn’t being done to find other causes. These mothers aren’t to blame. We need to find out why some children fall through the cracks. There is another cause, and we owe it to these children to stop blaming their mothers and find it.

About Misty

I'm a Christ follower before anything else! I was born with spina bifida. I've heard it called the most devastating, crippling birth defect that is still compatible with life. I have a totally different perspective on that. I'm married to a wonderful man and we are getting ready for some new beginnings! Jump on for the ride!
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24 Responses to But Didn’t You Take Your Folic Acid?

  1. Sylvia says:

    Amen! I was even taking the higher dose of folic acid (10x the normal “prenatal” dose) because of a family history of SB, and M still has it. I get asked all the time why I wasn’t taking any.

  2. Tiffany says:

    Amen Misty!!!

  3. Abe Medaris says:

    I think this is a great idea. Our third child has SB and my wife always did every thing she was supposed to with her prenatal care, including taking her folic acid. I am a doctor an have likewise been frustrated with my colleagues who ask the same question, “well didn’t your wife take folic acid?”. The truth is that it is a polygenic syndrome, that we don’t really understand. Medical school teaches little else besides the folic acid doctrine. There’s nothing wrong with this from a public health stand point, but serves little to no purpose for the individual family affected by SB.
    It’s frustrating that these brave mothers, who choose to bring these children into the world rather than abort them, are then made to feel ashamed and guilty as if they did something wrong. I applaud all these moms, folic acid aside. These children truly are a blessing and their parents are special people.

  4. Haley says:

    Thanks for this Misty!! Our little ones are very blessed to have you to look up to!

  5. Jill says:

    Awesome Misty!

  6. Roger says:

    Great post Misty!
    It’s time the “Folate Fascists” get taken down a notch or two so that the message can get through that folic acid is only partially effective.

  7. Absolutely! I was taking my vitamins, too. I can’t stand that question–society almost blames mothers without the full story.

  8. Kimberly says:

    I honestly think you’d be hard pressed to even find a mom in the US that wasn’t taking folic acid of some sort. You’re right, there has to be more to it. I even had my husband taking folic acid for months before we tried. I’m glad they are supplementing foods and getting the word out, but it’s still so frustrating that it’s assumed to be a cure-all when it’s obviously not.

  9. Landon says:

    My wife is a nurse, and the wipes used to clean off beds for the next patient contain butane. One study showed a potential link between butane and SB. It’s possible it’s just completely random too.

  10. Abigail says:

    This was powerful and I love looking at all the beautiful faces! Thank you for sharing.

  11. Megan Jackson says:

    This is the number one question I got asked while I was pregnant and still get asked to this day! It frustrates me to know end as I was taking folic acid months before I even got pregnant. This can still happen to your child even though you do everything “right”. Sometimes God has different plans for you and it just goes to show that He is in control. These children are amazing and I feel privileged I was trusted to be the mother of one of them.

  12. Gymp says:

    Very,very well said Misty !!!

  13. Stephenie says:

    I absolutely love it. You did a fantastic job

  14. Rebecca says:

    I totally agree that we need more research to prevent SB from even occuring. My daughter was born with SB and we entered the MOMS study that researched which surgery, prenatal or postnatal, is more beneficial. When I asked why they don’t research more on prevention, the response was always- Folic Acid and genetics, which made further research seem not needed. That has always frustrated me.

  15. Thank you for this post!!! I can just see the question burning at people when I tell them about Lauren’s SB. I would love to add a picture, but I don’t know how to attach one. Do I need an html for the photo and paste it here???

  16. Gretchen says:

    I agree!! Well stated, and so true. Folic Acid is such a small part of it, and I am so tired of people blaming me for my son’s diagnosis and disability. It is so frustrating and demeaning… I often look at people and ask “Why can’t you accept that he is a fabulous child just hte way he is???” :-)

  17. Hey Misty.
    this is just a fabulous and extremely educative website!

    I am an adult with SB here in Kenya you can view my blog opetsi.blogspot.com

    lovely weekend
    Reby!

  18. Barny says:

    I think this is a great idea. Our third child has SB and my wife always did every thing she was supposed to with her prenatal care, including taking her folic acid. I am a doctor an have likewise been frustrated with my colleagues who ask the same question, “well didn’t your wife take folic acid?”. The truth is that it is a polygenic syndrome, that we don’t really understand. Medical school teaches little else besides the folic acid doctrine. There’s nothing wrong with this from a public health stand point, but serves little to no purpose for the individual family affected by SB.
    It’s frustrating that these brave mothers, who choose to bring these children into the world rather than abort them, are then made to feel ashamed and guilty as if they did something wrong. I applaud all these moms, folic acid aside. These children truly are a blessing and their parents are special people.

    +1

  19. rachel says:

    What a gorgeous bunch of happy kiddies xx

  20. Kelley says:

    My Daughter took her folic acid way before getting pregnant and my granddaughter who will soon be here has spina bifida. She went to Vanderbilt and had in uterine surgery to close the leision. Seeing the beautiful children in these photos with their smiles makes me less worried about what she will be like. thank you for sharing

  21. Our third boy Sasha, is a brilliant six year old who has Spina Bifida the condition our son Josiah died from in 1996 .

  22. Kerri Lynn says:

    Thank you! I have not read your blog in a while, but seeing my angels face after reading….all I can say is thank you for being a friend, supporter, warrior and voice for all of us and our children! Love ya Misty xoxo

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