October is ‘Spina Bifida’ Awareness Month!

What is Spina Bifida?

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 eight babies born in the United States have Spina Bifida or a similar birth defect of the brain and spine, making it the most common permanently disabling birth defect in the United States.

What causes Spina Bifida?

No one knows for sure. Scientists believe that genetic and environmental factors act together to cause the condition.

How is Spina Bifida Treated?

A child with Meningomyelocele usually is operated on within two to three days of birth. This prevents infections and helps save the spinal cord from more damage. More often than not, the child is not paralyzed and grow up just fine.

What can you do to prevent Spina Bifida?

Expectant women should take folic acid before and during the first three months of pregnancy. Because half of the pregnancies in the United States are unplanned, 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 conditions are associated with Spina Bifida?

Children and young adults with Spina Bifida can have mental and social problems. They also can have problems with walking and getting around or going to the bathroom, latex allergy, obesity, skin breakdown, gastrointestinal disorders, learning disabilities, depression, tendonitis and sexual issues. 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 three tests (parents should know that no medical test is perfect, and these tests are not always right):

  1. 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.
  2. An ultrasound of the fetus. This is also called a sonogram and can show signs of Spina Bifida such as the open spine.
  3. 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.

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 percent of babies born with Spina Bifida now live to be adults, about 80 percent have normal intelligence and about 75 percent 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.
This information does not constitute medical advice for any individual. As specific cases may vary from the general information presented here, SBA advises readers to consult a qualified medical or other professional on an individual basis.

How Can You Help?

SBA’s National Resource Center on Spina Bifida (NRC) provides high quality, confidential information and referral services. Every year the NRC responds to as many as 10,000 questions about health care, education, employment, benefits, and more. The NRC is the only clearinghouse of information exclusively dedicated to Spina Bifida. The NRC can help:

  • Find the closest SBA Chapter or Spina Bifida clinic
  • Locate support resources in your area
  • Help facilitate your questions and answers through our Ask the Expert feature
  • And much more!

Whether you are an adult living with Spina Bifida, the parent of a child with Spina Bifida, or just found out that the baby you are carrying has Spina Bifida, the NRC is here to help. To access the NRC, simply submit a question using our Ask the Expert online form, send an email to sbaa@sbaa.org, or call 800-621-3141, ext. 35. You can also check them out on Facebook & Twitter

 

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