October is National Spina Bifida Awareness Month, a time to educate the public about the most common permanently disabling birth defect while celebrating the lives of the more than 166,000 Americans affected.
One out of every 1,000 newborns in the United States is born with spina bifida.
As the mother of a fun, intelligent, loving and determined 6-year-old born with spina bifida, I feel it’s my responsibility to educate as many as I can each October.
Spina bifida is a birth defect that results in the spinal cord protruding from a baby’s back. The back can be surgically closed before or after birth, but damage to the spinal cord can cause paralysis, fluid on the brain, bowel and bladder issues and other challenges.
No one knows what causes spina bifida, but women can reduce their risk by up to 70 percent by taking 400 mcg of folic acid daily for three months prior to conception. Every woman of childbearing age should take a daily multivitamin.
What are people with spina bifida like?
There is a wide range of outcomes. Some are barely affected, some are severely disabled and most fall somewhere in between. Some use wheelchairs; others use braces, crutches or walkers; and some walk independently. Most have normal intelligence. Spina bifida is only one part of them and does not define them.
What do you do when you see someone with a disability?
Make eye contact and smile. Instead of shushing children who ask questions, encourage them to ask the person about it or answer with: “Some people’s legs don’t work the same as yours so they need help to get around.”
As I write this, I ask my son, “Michael, what do you want people to know about spina bifida?” He answers promptly, “That I’m special” — and that he is. My son has spina bifida, but spina bifida doesn’t have my son.
If you would like to learn more, visit www.spinabifidaassociation.org.
By: TAMI RAMON YOUNG