This Information from National Institutes of Health, Bethesda, Maryland 20892, USA

National Institutes of Health, Bethesda, Maryland 20892 Written September 1997 SPINA BIFIDA Index: What is Spina Bifida? Is there any treatment? What is the prognosis? Is there any means of prevention? What research is being done? Where can I find more information? (last updated 3-6-00) DESCRIPTION: Spina bifida (SB) is a neural tube defect (a disorder involving incomplete development of the brain, spinal cord, and/or their protective coverings) caused by the failure of the fetus's spine to close properly during the first month of pregnancy. Infants born with SB sometimes have an open lesion on their spine where significant damage to the nerves and spinal cord has occurred. Although the spinal opening can be surgically repaired shortly after birth, the nerve damage is permanent, resulting in varying degrees of paralysis of the lower limbs. Even when there is no lesion present there may be improperly formed or missing vertebrae and accompanying nerve damage. In addition to physical and mobility difficulties, most individuals have some form of learning disability. The three most common types of SB are: myelomeningocele, the severest form, in which the spinal cord and its protective covering (the meninges) protrude from an opening in the spine; meningocele in which the spinal cord develops normally but the meninges protrude from a spinal opening; and occulta, the mildest form, in which one or more vertebrae are malformed and covered by a layer of skin. SB may also cause bowel and bladder complications, and many children with SB have hydrocephalus (excessive accumulation of cerebrospinal fluid in the brain). Return to Index TREATMENT: There is no cure for SB because the nerve tissue cannot be replaced or repaired. Treatment for the variety of effects of SB may include surgery, medication, and physiotherapy. Many individuals with SB will need assistive devices such as braces, crutches, or wheelchairs. Ongoing therapy, medical care, and/or surgical treatments may be necessary to prevent and manage complications throughout the individual's life. Surgery to close the newborn's spinal opening is generally performed within 24 hours after birth to minimize the risk of infection and to preserve existing function in the spinal cord. PROGNOSIS: The prognosis for individuals with SB depends on the number and severity of abnormalities. Prognosis is poorest for those with complete paralysis, hydrocephalus, and other congenital defects. With proper care, most children with SB live well into adulthood. PREVENTION: Recent studies have shown that the addition of folic acid to the diet of women of child-bearing age may significantly reduce the incidence of neural tube defects. Therefore it is recommended that all women of child-bearing age consume 0.4 mg of folic acid daily. RESEARCH: The NINDS supports a broad range of research on neural tube defects such as SB aimed at finding ways to treat, prevent, and, ultimately, cure these disorders. Return to Index These articles, available from a medical library, are sources of in-depth information on SB: Alexander, M, and Steg, M. "Myelomeningocele: Comprehensive Treatment." Archives of Physical and Medical Rehabilitation, 10; 637-641 (August 1989). Blum, R, et al. "Family and Peer Issues Among Adolescents with Spina Bifida and Cerebral Palsy." Pediatrics, 88:2; 280-285 (August 1991). Hobbins, J. "Diagnosis and Management of Neural Tube Defects Today." The New England Journal of Medicine, 324:10; 690-691 (March 7, 1991). To Obtain Suggested Resources (click)... *Additional information is available from the following organizations (last updated 3-6-00): Spina Bifida Association of America 4590 MacArthur Blvd., NW Suite 250 Washington, DC 20007-4266 (202) 944-3285 (800) 621-3141 www.sbaa.org March of Dimes Birth Defects Foundation 1275 Mamaroneck Avenue White Plains, NY 10605 (914) 428-7100 (800) MODIMES (663-4637) www.modimes.org Easter Seals 230 W. Monroe Street, Suite 1800 Chicago, IL 60606-4802 (312) 726-6200 (312) 726-4258 (TDD) (800) 221-6827 www.easter-seals.org Tethered Cord/ Lipomyelomeningocele Family Support Network 321 Hopewell Street Birdsboro, PA 19508 National Information Center for Children & Youth with Disabilities P.O. Box 1492 Washington, DC 20013-1492 (202) 884-8200 (800) 695-0285 www.nichcy.org Disabled Sports USA 451 Hungerford Drive Suite 100 Rockville, MD 20850 (301) 217-0960 Return to Index or NINDS Publications Page * Please refer to Warning & Notice of Disclaimers. National Institute of Neurological Disorders and Stroke National Institutes of Health Bethesda, MD 20892