I made these 'learning posts' in June for Spina Bifida Awareness month, but thought I'd make a stand-alone blog so that if anyone is interested, all of the information is here. And I can add as I learn more about spina bifida as well!

Spina Bifida is the most common birth defect in North America. My son Nickolas was born November 13, 2009 with spina bifida and I have chronicalled our journey here, in my personal blog.

I hope you enjoy and learn something!

The information from this blog has been collected by myself to share what I have learned. It should in no way replace medical recommendations or consultation. This is for educational and information purposes only.

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Wednesday, June 2, 2010


Hi everyone,
It is my first spina bifida awareness month. Anyone in Ontario may have noticed that at liquor stores there is a tin by the cash register asking for donations and awareness of the importance of folic acid. I had vaguely noticed these before but never really paid that much attention to it. Well now I do.
Folic acid [sorry Jill I have to mention it] is believed to decrease the chance of spina bifida occuring (not always - as I was taking prenatal vitamins when I got pregnant). And the folic acid initiative has been shown to statistically decrease the incidence of neural tube defects.

This time last year I only had a vague idea of what spina bifida was, and was pretty much limited to checking babies backs in their assessment and someone I met during my clinical placement, who was living in her own home with 3 kids and needed help to get around. Well that has changed and I hope that it has changed for many people that Nickolas and I have had contact with. My hope is that spina bifida will become a household name similar to other (and less common) birth defects such as Downs Syndrome and Cystic Fibrosis.
Yes spina bifida is the most common birth defect in North America (about 1 in 1000 births) and that does not even consider those babies that are terminated. But spina bifida is not very well known among the general public - think about your first thoughts about spina bifida.

So I'm going to take this month as an excuse to try to make spina bifida a household name. The main focus of the month is going to be preparing for my Spirit Wheel Walk Run, June 19. This is an event that was created by the Spina Bifida and Hydrocephalus Association of Ontario, but that is actually run by individual families. My event is a walk along the Pickering Lakeshore for 3 hours with Nickolas' Loved Ones - our family and friends.
To prepare I have talked to family and friends, made up a personal pamphlet with information as well as a poster that I posted at work (and apparently was not clear that it was about me and Nickolas). But here is the final stretch. Not only to do I want to raise funds, I want to create awareness. I want to shout from the rooftops - My Son has Spina Bifida and it is only One Aspect of Who He Is. He is a wonderful, happy child who will have difficulties in life (yes everyone does). He is what Spina Bifida Looks Like.

Education and awareness is my goal for this month. I'm hoping to put some educational material on here this month - as well as my up-to-date, what-is-going-ons.

I'm going to try to post the pamphlet I made up - it's a pdf file. And of course all my wonderful pics of my cutie-pies!

1 comment:

  1. Good luck with your walk, maybe next year we can get together and host an event together. Great site too!