About Spina Bifida

2 Men TalkingOver 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 65 million women at risk of having a baby born with Spina Bifida. Every day, an average of 8 births 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.

Angie fountainThe 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.

Thanks to new medical treatments and technology, most people born with Spina Bifida can expect to live a normal life.  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.


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