Over 250,000 Americans are in the Spina Bifida Community. An estimated 70,000 people in the United States are currently living with spina bifida, the most common permanently disabling birth defect. Spina Bifida is a neural tube defect that happens in the first month of pregnancy when the spinal column doesn’t close completely. There are 60 million women at risk of having a baby born with Spina Bifida. Everyday, an average of 8 babies are affected by Spina Bifida or a similar birth defect of the brain and spine. Each year, about 3,000 pregnancies are affected by these birth defects.
The Challenges of Spina Bifida
The effects of Spina Bifida are different for every person. Up to 90 percent of children with the worst form of Spina Bifida have hydrocephalus (fluid on the brain) and must have surgery to insert a “shunt” that helps drain the fluid—the shunt stays in place for the lifetime of the person. Other conditions include full or partial paralysis, bladder and bowel control difficulties, learning disabilities, depression, latex allergy and social and sexual issues.
What is Spina Bifida?
Spina Bifida literally means “split spine.” Spina Bifida happens when a baby is in the womb and the spinal column does not close all of the way. Spina Bifida is the most common birth defect that disables people for life. Every day, about eight babies born in the United States have Spina Bifida or a similar birth defect of the brain and spine.
Spina bifida is the most frequently occurring permanently disabling birth defect and the most common Neural Tube Defect. It affects approximately one out of every 1,000 newborns in the United States. Spina Bifida 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, individuals 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 buildup 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.
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This year’s National Conference will feature findings from the Second World Congress on Spina Bifida Research and Care, SBA’s international meeting of Spina Bifida health care providers and researchers. Be the first to hear about the latest in care treatment and what is on the horizon for this challenging condition!
