What is Spina Bifida?
Spina Bifida is the most common permanently disabling birth defect in the United States.
Spina Bifida literally means “split spine.”
Spina Bifida happens when a baby is in the womb and the spinal column does not close all of the way. Every day, about 8 babies born in the United States have Spina Bifida or a similar birth defect of the brain and spine.
What causes Spina Bifida?
No one knows for sure. Scientists believe that genetic and environmental factors act together to cause the condition.
What can you do to prevent Spina Bifida?
Women who are old enough to have babies should take folic acid before and during the first three months of pregnancy. The Spina Bifida Association asks women to take a vitamin with 400 mcg (0.4 mg) of folic acid each day during the years of their lives when they are possibly able to have children.
Women who have a child or sibling with Spina Bifida, have had an affected pregnancy or have Spina Bifida themselves should take 4000 mcg (4.0 mg) of folic acid for one to three months before and during the first three months of pregnancy.
What is folic acid?
Folic acid is a vitamin that the body needs to grow and be healthy. It is found in many foods, but the man-made or synthetic form in pills is actually better absorbed by our bodies.
What conditions are associated with Spina Bifida?
Mobility – walking and getting around
Bladder, Bowel & gastrointestinal disorders
What physical limitations exist?
People with Spina Bifida must learn how to get around on their own without help, by using things like crutches, braces or wheelchairs. With help, it also is possible for children to learn how to go to the bathroom on their own. Doctors, nurses, teachers and parents should know what a child can and cannot do so they can help the child (within the limits of safety and health) be independent, play with kids that are not disabled and to take care of him or herself.
Can Spina Bifida be detected before birth?
Yes. There are 3 tests.*
A blood test during the 16th to 18th weeks of pregnancy. This is called the alpha-fetoprotein (AFP screening test). This test is higher in about 75–80 % of women who have a fetus with Spina Bifida.
An ultrasound of the fetus. This is also called a sonogram and can show signs of Spina Bifida such as the open spine.
A test where a small amount of the fluid from the womb is taken through a thin needle. This is called maternal amniocentesis and can be used to look at protein levels.
*Parents should know that no medical test is perfect, and these tests are not always right.
Can children with Spina Bifida grow up and live full lives?
Yes. With help, children with Spina Bifida can lead full lives. Most do well in school, and many play in sports. Because of today’s medicine, about 90% of babies born with Spina Bifida now live to be adults, about 80% have normal intelligence and about 75% play sports and do other fun activities.
How is Spina Bifida managed?
As type and level of severity differ among people with Spina Bifida, each person with the condition faces different challenges and may require different treatments.
The best way to manage Spina Bifida is with a team approach. Members of the team may include neurosurgeons, urologists, orthopedists, physical and occupational therapists, orthotists, psychologists and medical social workers.
SPINA BIFIDA NATIONAL ASSOCIATION MEDICAL INFORMATION
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