Folic Acid...Spina Bifida...and the Elephant in the room.

There has been a lot of talk lately in the Spina Bifida community about folic acid and its relation to Spina Bifida. Did you know that by taking folic acid you can decrease the possibility of your child being born with Spina Bifida by up to 70%? That is pretty impressive. I always encourage women who are sexually active to take the recommended 400 mcg of folic acid daily. It can make all the difference.

I wanted to write this blog to educate others about folic acid, but I also wanted to address the elephant in the room. I have talked a little in the past about Chandlor’s Spina Bifida being genetic. I could have taken 100 times the recommended dose of folic acid, jumped through a flaming hoop, walked on water…and Chandlor still would have been born with Spina Bifida. It is a genetic code, and unfortunately at this time that genetic code cannot be altered or undone.

I was not taking folic acid when I became pregnant with Chandlor. He was the best surprise of my life, but I was not prepared. Even if I would have been trying to get pregnant I had NO idea that I should be taking folic acid while trying. After I saw the positive sign on the pregnancy test? Sure! Call me uneducated…call me naïve…or call me human. I didn’t know.

Chandlor was two months old when I found out that he had a duplication on his XQ27.1 chromosome and that this duplication that I unknowingly and involuntarily passed to him had caused his Spina Bifida. So from the time I was 18 weeks pregnant until Chandlor was two months old I thought that I could have played a role in him having Spina Bifida. This crushed me. It was the darkest part of my entire life. Not only did my baby have a life threatening birth defect, but there was a 70% chance I could have prevented it (so I thought). I had a nurse in the NICU say to me “I don’t know why we see so many babies come through here with Spina Bifida…they know what causes it” she was wrong. In every way possible. But it still broke my heart. I have heard of several other people putting the blame on me for Chandlor having Spina Bifida…luckily it was around a dear friend who came to my defense (Shout out to that friend! You know who you are.).

My heart breaks for other moms who have children with Spina Bifida and like me, did not take folic acid. Some of them were in similar situations as me. Either they truly did not know they should be taking folic acid, or their pregnancy was unplanned. They will likely never know what caused their child to have Spina Bifida. Most people who have an accidental pregnancy are not taking folic acid, yet the only people who get ridiculed for it are the people who have children with Spina Bifida? Not fair. Not appropriate. Not right. It infuriates me.

I want to encourage you to take folic acid. Every day. Especially if you are trying to conceive. I want to encourage you to tell other women who are in their child bearing years to take folic acid. Every day. It is so important.

If you have any question PLEASE feel free to ask me. Anything, really. I hope this post doesn’t sound too self-centered. I wanted to highlight a particularly sucky time in my life in hopes of encouraging others to take folic acid. It played no role in Chandlor having Spina Bifida but it COULD have.