Wednesday, October 14, 2009

Spina Bifida Awareness Month

October is national SB awareness month. I have been wanting to post something about this for my family and friends, but in all honestly I was not sure what to say. A wonderful woman named Colleen that I met on the babycenter website (the Spina Bifida Kids group) recently made a post on facebook that I love! I asked if I could steal it (as well did others :) and she gave the go ahead) So I am just going to copy over most of what she put for you all to see! I hope each and every one of you will take a min to read it all! And I want to thank you in advance for doing so! The following is what Colleen referred to as:

"The run-down of Spina Bifida"
1. It's a birth defect in which the neural tube doesn't completely close, so basically, the spinal cord is exposed to amniotic fluid and all the bumping around that a baby does in utero. This causes damage to the spinal cord, which can result in paralysis, hydrocephalus (fluid on the brain), bowel and bladder issues, and other problems.

2. All women of childbearing age--let me say that again: ALL WOMEN OF CHILDBEARING AGE--should be taking at least 400 mcg of folic acid, which is usually present in any multivitamin or prenatal vitamin. This has been shown to reduce the risk of having a child with SB by 70%. Because the neural tube closes in the first 28 days of pregnancy, the birth defect can occur before a woman even knows she is pregnant. And we all know that pregnancy is not always planned. (Folic acid has all kinds of other benefits too, like preventing several types of cancer and dementia.)

3. Spina Bifida is not a death sentence. If you or someone you know finds out their baby has spina bifida, there is no reason to terminate the pregnancy, despite what many obstetricians might tell you. Much like the autism spectrum, the range of outcomes with SB is widely varied. Some are barely affected at all, some are severely disabled, and most fall somewhere in between. The birth defect usually does not affect cognition--most people with SB have average to above average intelligence. These children have far more in common with their typical peers than they have differences. Spina bifida is only one part of them and does not define them. They can and do become teachers, doctors, musicians, atheletes ... anything they want to be.

4. As a parent, when you find out your child has SB, it's shocking and scary and sad, and you have to grieve. Then when your baby is born, you are shocked at how "normal" your child is, and you're over the moon and shocked that you are happy again. In my three year journey with a child with SB, I've become a better version of myself. I'm more patient, more compassionate, have a purpose to my life that I didn't have before, and I appreciate the "little" things. Example: My son standing still by himself at PT today? A miracle. What at one time seemed like the worst thing that had ever happened to me turned out to be the biggest blessing God could have bestowed on me.

I want to give a special thank you to Colleen again for letting me use this! You did a wonderful job Colleen!!

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