What are neural tube defects?
Neural tube defects (NTDs) are serious birth defects that involve incomplete development of the brain, spinal cord and or protective coverings for these organs. There are three types of NTDs: anencephaly, encephalocele, and spina bifida.

Babies born with anencephaly have underdeveloped brains and incomplete skulls. Most infants born with anencephaly do not survive more than a few hours after birth. Encephalocele results in a hole in the skull through which brain tissue protrudes. Although most babies with encephalocele do not live or are severely retarded, early surgery has been able to save a few children.

What is spina bifida?
Spina bifida, the most common NTD, is one of the most devastating of all birth defects. It results from the failure of the spine to close properly during the first month of pregnancy. In severe cases, the spinal cord protrudes through the back and may be covered by skin or a thin membrane. Surgery to close a newborn's back is generally performed within 24 hours after birth to minimize the risk of infection and to preserve existing function in the spinal cord.

Because of the paralysis resulting from the damage to the spinal cord, people born with spina bifida may need surgeries and other extensive medical care. The condition can also cause bowel and bladder complications. A large percentage of children born with spina bifida have hydrocephalus, the accumulation of fluid in the brain. Hydrocephalus is controlled by a surgical procedure called "shunting" which relieves the fluid build up in the brain by redirecting it into the abdominal area. Most children born with spina bifida live well into adulthood as a result of today's sophisticated medical techniques.

How offen does it occur?

  • All women capable of becoming pregnant are at risk of having a child born with spina bifida
  • 90-95 percent of babies born with spina bifida are born to parents with no family history of spina bifida
  • Each year in the U.S. about 4000 pregnancies are affected by spina bifida and anencephaly, an average of 11 pregnancies per day
  • Spina bifida affects approximately 1 out of every 1000 newborns in the U.S.

What is the risk of recurrence?

  • If parents have one child with spina bifida, the risk of recurrence increases to between 1 and 5 out of 100.
  • If one parent has spina bifida, the chances of having a child with spina bifida are between 1 and 5 percent.
  • If both parents have spina bifida, the chances of having a child with spina bifida increases to 15 percent.

Can spina bifida be prevented?
The cause of spina bifida is unknown. Recent studies have shown that one factor that increases the risk of having a baby with spina bifida is low folic acid intake before conception and during the first few weeks of pregnancy. If all women of childbearing age were to consume 0.4 mg of folic acid prior to becoming pregnant and during the first trimester of pregnancy, the incidence of folic acid preventable spina bifida could be reduced by up to 75 percent. For more information, go to Folic Acid Campaign.

What about learning problems?
Some people with spina bifida do experience learning problems. They may have difficulty with paying attention, expressing or understanding language, organizing, sequencing and grasping reading and math.

What about physical limitations?
People with spina bifida need to learn mobility skills, and often with the use of crutches, braces, or wheelchairs can achieve more independence. Also, with new techniques they can become independent in managing their bowel and bladder problems. Physical disabilities like spina bifida can have profound effects on one's emotional and social development. It is important that health care professionals, teachers, and parents understand these physical capabilities and limitations. To promote personal growth, they should encourage children with spina bifida (within limits of safety and health) to be independent, to participate in activities with their non-disabled peers and to assume responsibility for their own care. This should be stressed continually as they approach adulthood.

What are secondary conditions associated with spina bifida?
Special attention is needed to identify and treat secondary disabilities. Due to the wide range of neurological damage and mobility impairment it can be difficult to identify some secondary disabilities. Attention should be focused on the psychological and social development of children and young adults with spina bifida. Examples of secondary conditions associated with spina bifida are latex allergy, tendonitis, obesity, skin breakdown, gastrointestinal disorders, learning disabilities, attaining and retaining mobility, depression, and social and sexual issues.

What is the risk for latex allergy?
While it is not known how this allergy develops, anybody can develop a latex allergy. However, certain groups of individuals have been identified as having a greater risk of becoming latex allergic. Those at higher risk include people who are frequently exposed to latex (rubber) products, such as children and adults with spina bifida and health professionals. Research has shown that spina bifida patients have the potential to become allergic (to some degree) to latex.

Typical symptoms include watery eyes, wheezing, hives, rash, swelling, and in severe cases, anaphylaxis ( a life threatening reaction). These responses can occur when items containing latex touch the skin, the mucous membranes (like the mouth, genitals, bladder or rectum), open areas or bloodstream (especially during surgery). Anyone with a latex allergy should avoid exposure to all products that contain latex.

For more information about spina bifida and related conditions, click on the following:

Spina Bifida Association of America    (http://www.sbaa.org)

 
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