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What is Spina Bifida?

Spina Bifida is the most common permanently disabling birth defect in the United States . An average of 8 babies every day are born with Spina Bifida or a similar birth defect of the brain and spine. There are over 65 million women in the US who could become pregnant and each one is at risk of having a baby born with Spina Bifida.

Spina Bifida occurs when the spine of the baby fails to close. This creates an opening, or lesion, on the spinal column. Spina Bifida happens during the first month of pregnancy when the spinal column and brain, or neural tube, is formed. This is before most women even know they are pregnant.

Are there different types of Spina Bifida?

There are three types of Spina Bifida.

  1. Occulta: Often called, "hidden Spina Bifida," the spinal cord and the nerves are usually normal and there is no opening on the back. There is a small defect or gap in a few of the small bones (vertebrae) that make up the spine. People who have occulta generally experience few or no symptoms. People often don't even know they have it.
  2. Meningocele: The protective coatings of the spinal cord (meninges) come through the open part of the spine like a sac that is pushed out. Individuals may experience minor disabilities; however, problems can develop late in life.
  3. Myelomeningocele: This is the most serious type of Spina Bifida, which causes nerve damage and more severe disabilities. It occurs with the meninges (protective covering of the spinal cord) and spinal nerves come through the open part of the spine.

What are the complications of Spina Bifida?

Special attention is needed to identify and treat conditions associated with Spina Bifida. Due to the wide range of neurological damage and mobility impairments, it can be difficult to identify some secondary conditions. Attention should be focused on the psychological and social development of children and young adults with Spina Bifida. Conditions associated with Spina Bifida include mobility impairments, bowel and bladder complications, latex allergy, obesity, skin breakdown, gastrointestinal disorders, learning disabilities, depression, tendonitis, and social and sexual issues.

What are the costs associated with Spina Bifida?

The economic and social costs associated with Spina Bifida - for both the affected individuals and their families - can be significant.  The average total lifetime cost to society for each infant born with Spina Bifida is approximately $532,000 per child. This estimate is only an average and for many children the total cost may be well above $1 million. Estimated total annual medical care and surgical costs for persons with Spina Bifida in the United States exceed $200 million. Currently available statistics on the cost of Spina Bifida are estimates based on the average dollar in the mid-1980s. Therefore, due to inflationary increases over the past two decades, these cost statistics likely are higher.

How many people with Spina Bifida live in the United States?

Recent research has estimated that the number of Americans living with all forms of Spina Bifida may be as high as 166,000. Based on this national estimate and the birth rate of Spina Bifida, approximately 7,645 people with Spina Bifida live in California. It is anticipated that the number may be higher as there are 54 million people living with disabilities in the United States.

Who is at risk for Spina Bifida?

In the United States , there are 65 million women of childbearing age and each one is potentially at risk of having a pregnancy affected by Spina Bifida. Birth defects can happen in any family. In fact, 95 percent of neural tube defects (NTDs) occur in women with no personal or family history of NTDs. However, according to the CDC, some risk factors are known:

  • A previous NTD-affected pregnancy increases a woman's chance to have another NTD-affected pregnancy by approximately 20 times; 
  • Maternal insulin-dependent diabetes;
  • Use of certain anti-seizure medication (Valproic acid/Depakene, and Carbamazapine/Tegretol);
  • Medically diagnosed obesity;
  • High temperatures in early pregnancy (i.e., prolonged fevers and hot tub use);
  • Race/ethnicity (NTDs are more common among white women than black women and more common among Hispanic women than non-Hispanic women); and
  • Lower socio-economic status.

For more information visit www.spinabifidaassociation.org.

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