What is Spina Bifida?

Most people are not familiar with spina bifida even though it is common. Spina bifida is a life-long birth defect […]

Most people are not familiar with spina bifida even though it is common. Spina bifida is a life-long birth defect in which the spine has not closed completely. One out of every 1,000 newborns in the United States has it, but have you heard of it?

“All I knew before my pregnancy was that I didn’t have kids with problems. I had heard of spina bifida, but other than that, I knew absolutely nothing about it. After all, this kind of thing doesn’t happen to people like me,” said Jane J. of Georgia. But most babies born with the birth defect spina bifida are born to parents with no family history of the birth defect.

Thirty years ago most babies born with spina bifida died. Today, eighty to ninety percent of infants born with spina bifida live. Many who have spina bifida go on to lead successful and productive lives. The effects of spina bifida vary widely from individual to individual. It is a medically complex birth defect affecting the orthopedic, urologic, and central nervous system.

Spina bifida is the most common neural tube defect (NTD), a group of serious birth defects of the brain and spinal cord. It may include paralysis of the legs, loss of bowel and bladder control, water on the brain, learning disabilities, depression, latex allergy, and social and sexual issues. NTDs, like spina bifida, occur during the first month of pregnancy—before most women know they are pregnant.

The exact cause of spina bifida is not known, however genetics and environmental factors are involved. Daily consumption of the B-vitamin, folic acid, prior to pregnancy reduces the occurrence of spina bifida up to 70%. Folic acid helps build healthy cells. It is important for all women of childbearing age to take a vitamin with folic acid every day since birth defects like spina bifida happen in the first weeks of pregnancy.

Women who have had a child with spina bifida or who have spina bifida themselves need ten times more folic acid by prescription to reduce the risk of recurrence. It is important for women to speak with a doctor and plan their pregnancy to be sure they are getting the right amount of folic acid. “Try to map out things in advance…For instance, I would definitely meet with an obstetrician ahead of time, explain your experience with spina bifida, ask about recommendations, etc.,” says Hannah M., mother of a child with spina bifida.

For couples not thinking about having a child right now, it is still important to take a vitamin with folic acid everyday because about half of all pregnancies in the United States are not planned. While folic acid cannot guarantee having a healthy baby, it can help. Besides helping with a healthy pregnancy, folic acid has been shown to have other benefits for both men and women in fighting heart disease and certain cancers. You can get folic acid in a vitamin that has folic acid and foods rich in folic acid like dark green leafy vegetables, oranges, and fortified breads and cereals.

In addition to folic acid, a genetic link is involved in spina bifida. Researchers have not yet found definitive genetic patterns that influence spina bifida; however, studies are now investigating the specific genes thought to be responsible for the birth defect. “It is our hope that genetic discoveries will eventually lead to a better understanding of how spina bifida develops so that more effective treatments and preventive measures will be available,” says Cindy Brown-stein, Chief Executive Officer of the Spina Bifida Association of America (SBAA), the only national organization representing the spina bifida community.

In an effort to increase general awareness of spina bifida, SBAA is launching a National Spina Bifida Awareness Campaign for October, Spina Bifida Awareness Month. The campaign will involve SBAA’s 57 local chapters in community events, outreach to businesses, and media advocacy. “Someday soon, we hope people will know what spina bifida is, just like they know their name,” said Brownstein.

To learn more about spina bifida, please contact SBAA at 1-800-621-3141 or visit www.sbaa.org.

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