A Journey with Love and Laughter

Read about our family as we journey through life as a family, with siblings, school and spina bifida, and lots of fun and laughter along the way!

Thursday, July 7, 2011

The thing about folic acid awareness...

Folic acid. You know, the thing you are supposed to take when you are trying to become pregnant so prevent some horrible birth defect.
That is what used to come to mind when I heard about folic acid. And the new campaign by the SBHAO (our organisations) help to educate the public with their educational posters.

"Every healthy baby is a victory.... 1 in 1300 babies are born with a neural tube defect" Is the Ontario slogan.

That slogan makes me a little sick to my stomach. In fact it makes me down right nauseous when I know that it comes from my own organisation. You know the one who is supposed to show what spina bifida looks like, the organization that is supposed to support the parents and educate the public. The organization that I work so hard fundraising for with calender sales and the SWWR walk.
Jill has already discussed it. But if every child is a victory - except of course my child. My glaringly 1 child, in 1300 victorious children!

Other folic acid ads are the same. Take this or suffer the consequences!!
Except of course for those of us taking folic acid when we got pregnant (Misty touched on this). Lots of us moms (lots and lots) took folic acid and our kids still had spina bifida. So wait a second? Folic acid doesn't make us victorious? Folic acid isn't the end all, cure all?
Folic acid is part of the picture. But so is environment, so is genetics, so is other unknown aspects of our lives. And sometimes it is just part of the plan. I am not against folic acid, I know how important it is, and I make sure that all of my child bearing family know to take the super dose of folic acid - my sister, Kyle's sister in law, and my brothers fiance. And of course myself.

I have been really lucky that I haven't heard the "didn't you take folic acid" question. Never.
I was very vocal that I was still breastfeeding and taking prenatals when Nick was conceived. And continued them when we got our positive test (at 4 weeks). So at that 8 week mark (you know the one) I was fully folic acid-ed up!

In fact, when I was first telling people spina bifida, I explained it by saying "you know the thing that folic acid is supposed to prevent? It doesn't always, and that is what Nick will be born with"

Folic acid is like sunscreen, like condoms, like seat belts. Yes it helps to prevent, but not all the time. So when you hear that someone got cancer or pregnant or hurt in an accident do you automatically think they were to blame?! Or that they were not doing everything they could do for their own health?
Because 1 in 1300 is  still 99.923077 percent effective.
Are condoms that effective? Birth control? Can you think of something that is more than 99.9% effective?!

Folic acid is quite effective, the rates have decreased over the years (from 1 in 1000). But spina bifida and other neural tube defects (when something happens during that pivotal 8 weeks mark of the developing spine and brain 'neural tube') are generally an unknown cause. Something about genetics and environment, diet and unknown factors.
This year's folic acid slogan reminds me of the advertising head thump that occurred this week with the Toronto Argo's (football). "Home is where the heart is, it is also where we hurt people". Oops!

So that is my little spiel about folic acid. And maybe a plea to the SBHAO to rethink their slogans about folic acid, with a little more tact to parents who know that they were apparently left grievously wounded on the field of battle. While 1300 other children stand victorious.


  1. I hear ya momma. It plays tricks on my mind and heart when I hear about folic acid in conjunction to preventing such "defects" like my child was born with. I was taking more than the recommended dose of folic acid a good 6 months before I became pregnant. I guess you would say it didn't "work". Though my little boy is by no means a mistake or "defective". I love him. I need him. Just the way he is. But does it scare me when I think of future pregnancies - oh boy yes. I want more babies. But how can I prevent them from having SB when folic acid didn't seem to make the difference in me last time? It's scary. And these campaigns are great in raising awareness - but they leave me with a knot in my stomach. Firstly because I know we didn't fall into that "success" group - it's not all about folic acid. Secondly because I never, ever want our children to feel anything less than the victorious heros they are. So in the mean time...I think we raise awareness not only for folic acid victories...but for SB victories. Just as beautiful...and even more powerful. :)

  2. Nicely said! Going to do a link on my blog to your post - I have had the "Didn't you take folic acid" question many a time - I also took folic acid before I got pregnant and during my whole pregnancy and Jake was still born with spina bifida too! Too tired right now to write more but I just want to thank you for putting this out there!

  3. hI
    my name is Jenna and i came across your site. Nicholas is an amazing, courageous, strong and determined fighter. He is a brave warrior, smilen champ, and an inspirational hero. I was born with a rare life threatening disease, and love it when people sign my guestbook. www.miraclechamp.webs.com

  4. I'm still mad about this!! Did you end up sending anything to the SBHAO yet? I keep thinking I need to. Yep, the more I think about it the more angry I get. If THEY are so STOP THE SB then how in the world can we expect the OB's to be positive about it?? Ugh. Makes me ill.

    And I can't believe you've never been asked about it. Good grief, don't ever come to the doctors and specialists here. I think every one has asked me twice. It's been a while though. Maybe they're finally done asking. ;)