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The Challenges of Spina Bifida

The effects of Spina Bifida are different for every person. Up to 80 percent of children with the most severe 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 might include full or partial paralysis,  learning disabilities, bladder and bowel control issues, depression, latex allergies, and social and sexual issues. Thanks to new medical treatments and technology, most people born with Spina Bifida can expect to live a normal life span.  People with Spina Bifida have many special challenges because of their birth defect, but their condition does not define who they are. People with Spina Bifida have careers, get married, and have children just like people who do not have Spina Bifida. (Statistics updated 8 June 2014)

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Over 250,000 Americans are in the Spina Bifida Community. An estimated 177,000 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 65 million women at risk of having a baby born with Spina Bifida. Every day, an average of 7 births are affected by Spina Bifida or a similar birth defect of the brain and spine. Each year, about 2,000 pregnancies are affected by these birth defects.

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