Spina Bifida (SB) is a neural tube defect (a disorder involving incomplete development of the brain, spinal cord, and/or their protective coverings).
SB is 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.
Causes of Spina Bifida?
The exact cause is unknown; however, scientists believe a combination of genetic and environmental factors contribute to Spina Bifida.
Can Spina Bifida be Detected Before Birth?
Yes. There are three prenatal tests that can be done the AFP screening test, which checks blood levels for a protein called alpha-fetoprotein, sonograms, and amniocentesis.
Types of Spina Bifida
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
- Occulta, the mildest form, in which one or more vertebrae are malformed and covered by a layer of skin
Complications of Spina Bifida
In addition to physical and mobility difficulties, most individuals with SB have some form of learning disability. SB may also cause bowel and bladder complications, and many children with SB have hydrocephalus (excessive accumulation of cerebrospinal fluid in the brain).
Spina Bifida Treatment
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 individuals life.
Surgery to close the newborns 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.
What is the 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.
Where Can I Get More Information?
Disabled Sports USA
451 Hungerford Drive
Suite 100
Rockville, MD 20850
Phone 301-217-0960
Fax Fax: 301-217-0968
E-mail dsusa@dsusa.org
Website: www.dsusa.org
March of Dimes Foundation
1275 Mamaroneck Avenue
White Plains, NY 10605
Tel: 914-428-7100 888-MODIMES (663-4637)
Fax: 914-428-8203
E-mail askus@marchofdimes.com
Website: www.marchofdimes.com
National Dissemination Center for Children with Disabilities
U.S. Dept. of Education, Office of Special Education Programs
P.O. Box 1492
Washington, DC 20013-1492
Tel: 800-695-0285
Fax: 202-884-8441
E-mail nichcy@aed.org
Website: www.nichcy.org
Spina Bifida Association of America
4590 MacArthur Blvd. NW
Suite 250
Washington, DC 20007-4266
Tel: 202-944-3285 800-621-3141
Fax: 202-944-3295
E-mail sbaa@sbaa.org
Website: www.spinabifidaassociation.org
Some of this information was provided by the National Institute of Neurological Disorders and Stroke and the National Institutes of Health.