Monday, October 8, 2012


Spina Bifida Awareness

Three and a half years ago I first heard the diagnosis. I was devastated and scared not having a clue what SB was or how it would impact our lives. If you've met Alex, ever seen his light up the room smile or watch him tear around in his wheels, you'll feel his impact in our lives.

Spina Bifida is not WHO he is, just something he happens to have. He is an amazing gift, just like his twin brother. We have met amazing people and had tremendous support from others these last three and a half years, blessings we wouldn't have known if it wasn't for SB. I am hoping to bring awareness so that maybe the next parent who hears those words might remember Alex or any of his amazing friends and be a little less scared!

Did you know that every year 1,500 babies will be born in the U.S. alone with Spina Bifida? Did you know that its the most COMMON permanently disabling birth defect? Did you know it literally means "split spine" and that it happens BEFORE the 28th day of pregnancy--before many women even know that they are pregnant? ***While there is no cure and there is still much to learn, taking a vitamin with folic acid is thought to decrease this birth defect up to 70%!! ***

Well before a very cute and feisty little boy came into my life three and a half years ago, I certainly didn't know any of these things. I had barely even HEARD of it and hearing the diagnosis I was terrified. I can't tell you how many times my husband and I had to hear the "option" of terminating our pregnancy because of the prediction of my son having a very poor quality of life. 

By the way, have you seen my son? 
Hardly what I would call having a poor quality of life-but I digress.

What is scarier is that many of the Perinatologists who will be reading a woman's ultrasound and giving that diagnosis often times have very outdated information about SB and give a very bleak prognosis. Expectant parents put their trust in those with an M.D. after their name, and they are quite frankly making life and death decisions with the information they are given.

While there is no cure for SB, the advances in medical treatment have come a tremendous way in recent years.The doctors who are diagnosing spina bifida ARE NOT the doctors who are involved with, care for and see first hand all those who are living with SB are accomplishing. Please note: I am not trying to bury my head in the sand or diminish that people living with SB don't have extra medical concerns or challenges to overcome. I just want awareness and education to catch up with the reality. Spina Bifida today with early medical intervention and preventative care is VASTLY different than Spina Bifida of even a decade ago.

Women: PLEASE print this out and bring to your next yearly appointment. If every one of us could do this, just think how many people we could help. PLEASE pass this on to the doctors in your lives so that hopefully the next woman who hears this diagnosis will have the information and support she needs. Together we can move mountains!!!
THANK YOU!!!!!!!!!

The medical professional's guide to spina bifida

An expectant parents guide to Spina Bifida

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