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Spinal Cord Injury Paralysis Resource Center

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Spina Bifida

Spina bifida is a type of neural tube defect (NTD). The term means cleft spine, or incomplete closure in the spinal column. The most serious form of spina bifida may include muscle weakness or paralysis below the cleft area, loss of sensation below the cleft, and loss of bowel and bladder control.

In general, there are three types of spina bifida (from mild to severe):

1. Spina bifida occulta: an opening in one or more of the vertebrae (bones) of the spinal column without apparent damage to the spinal cord.

2. Meningocele: The meninges, or the protective covering around the spinal cord, pushes out through the opening in the vertebrae in a sac called the meningocele. The spinal cord remains intact; this can be repaired with little or no damage to the nerve pathways.

3. Myelomeningocele: This is the most severe form of spina bifida, in which a portion of the spinal cord itself protrudes through the back. In some cases, sacs are covered with skin; in others, tissue and nerves are exposed.

Approximately 40 percent of all Americans may have spina bifida occulta, but because they experience little or no symptoms, very few of them ever know that they have it.

The other two types of spina bifida, meningocele and myelomeningocele, are known collectively as spina bifida manifesta, and occur in approximately one out of every thousand births.

A common effect of myelomeningocele is an accumulation of fluid in the brain (a condition known as hydrocephalus). A large percentage of children born with myelomeningocele have hydrocephalus, which is controlled by a surgical procedure called shunting. This relieves the fluid buildup in the brain and reduces the risk of brain damage, seizures or blindness. Hydrocephalus may occur without spina bifida, but the two conditions often occur together.

Examples of secondary conditions associated with spina bifida are latex allergy, tendinitis, obesity, skin breakdown, gastrointestinal disorders, learning disabilities, attaining and retaining mobility, depression, and social and sexual issues.

In some cases, children with spina bifida who also have a history of hydrocephalus experience learning problems. They may have difficulty with paying attention, expressing or understanding language, and grasping reading and math. Early intervention with children who experience learning problems can help considerably to prepare them for school.

Although spina bifida is relatively common, until recently most children born with a myelomeningocele died shortly after birth. Now that surgery to drain spinal fluid and protect children against hydrocephalus can be performed in the first 48 hours of life, children with myelomeningocele are much more likely to live. Quite often, however, they must have a series of operations throughout their childhood.

Spina bifida usually is an isolated birth defect. Although scientists believe that genetic and environmental factors may act together to cause this and other neural tube defects, 95 percent of babies with spina bifida are born to parents with no family history of the disorder. While spina bifida appears to run in certain families, it does not follow any particular pattern of inheritance.

Women with certain chronic health problems, including diabetes and seizure disorders (treated with certain anticonvulsant medications), have an increased risk (approximately 1/100) of having a baby with spina bifida.

Birth defects can happen in any family. Many things can affect a pregnancy, including family genes and things women may come in contact with during pregnancy. Recent studies have shown that folic acid is one factor that may reduce the risk of having an NTD baby. Taking folic acid before and during early pregnancy reduces the risk of spina bifida and other neural tube defects.

 

Sources: Spina Bifida Associations of America, National Institute of Neurological Disorders and Stroke, March of Dimes Birth Defects Foundation

A Reeve Foundation Fact Sheet on Spina Bifida (PDF)

Mayo Clinic: Spina BifidaMayo Clinic is a not-for-profit medical practice dedicated to the diagnosis and treatment of virtually every type of complex illness. Mayo Clinic staff members work together to meet your needs. You will see as many doctors, specialists and other health care professionals as needed to provide comprehensive diagnosis, understandable answers and effective treatment.

March of Dimes: Spina BifidaWe're dedicated to improving the health of babies by preventing birth defects, premature birth and infant mortality.

March of Dimes Birth Defects FoundationOffers information about the four major problems that threaten the health of America's babies: birth defects, infant mortality, low birthweight, and lack of prenatal care. Good resources and information on Spina Bifida.

National Institute of Neurological Disorders and StrokeProvides research overviews for all diseases and conditions related to paralysis.

Spina Bifida ConnectionSpina Bifida Connection is a person to person support website for spina bifida. This site offers resources, personal experiences, and support so that our visitors can discover options and make decisions for themselves. We hope you will join us as we discuss the ups, downs, positives and negatives of living with spina bifida!

Spina Bifida Association of America (SBAA)Locate local SBAA Chapters by using the interactive map on the SBAA's Group Members (Chapters) web page.

Paralysis Resource Center The Reeve Foundation Paralysis Resource Center Information Specialists are reachable business weekdays, Monday through Friday, toll-free at 800-539-7309 from 9:00 am to 5:00 pm ET. You may also schedule a call or send a message online.

Reeve Foundation Online Paralysis Community Connecting people living with paralysis, families, friends and caregivers so we can share support, experience, knowledge, and hope.

Quality of Life Grants DatabaseFind resources within the PRC Quality of Life Grants Database. Search by Zip Code, State or an Entire Category.

Library Books and VideosFind resources within the PRC library catalog.

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The Reeve Foundation Paralysis Resource Center Information Specialists are reachable business weekdays, Monday through Friday, toll-free at 800-539-7309 from 9:00 am to 5:00 pm Eastern U.S. Time. International callers use 973-467-8270. You may also schedule a call or send a message online.

This project was supported, in part by grant number 90PR3001, from the U.S. Administration for Community Living, Department of Health and Human Services, Washington, D.C. 20201. Grantees undertaking projects under government sponsorship are encouraged to express freely their findings and conclusions. Points of view or opinions do not, therefore, necessarily represent official Administration for Community Living policy.