Spina Bifida Association
- 1600 Wilson Blvd
Arlington, VA 22209
The Spina Bifida Association of America (SBAA) promotes the prevention of spina bifida and aims to enhance the lives of all affected. The Association was founded in 1973 to address the specific needs of the spina bifida community and serves as the national representative of almost 60 chapters. SBAA’s efforts benefit thousands of infants, children, adults, parents and professionals each year. In a continuing commitment to improve the quality of life for persons with spina bifida, SBAA is active in efforts to influence public policy, raise public awareness of spina bifida and promote the folic acid message.
Spina bifida is the most frequently occurring permanently disabling birth defect. It affects approximately one out of every 1,000 newborns in the United States. Spina bifida 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 also 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.
This organization has completed the National Health Council’s Standards of Excellence Certification Program and meets the highest standards of accountability, ethical practice, organizational effectiveness, and good public stewardship.
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