What is Spina Bifida?
By Spina Bifida Association of America
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.
