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About Spina Bifida and Hydrocephalus

Spina Bifida

Spina Bifida occurs within the first four weeks of pregnancy before many women are even aware they are pregnant. For some unexplained reason, the central nervous system of the developing baby fails to form normally at some point along its length, anywhere from the brain to the end of the spinal canal. Spina Bifida actually means split spine. The bones surrounding the developing spinal cord do not close. Instead, they remain open, leaving a bubble-like deformity on the spine of the child. This results in varying degrees of permanent damage to the spinal column and the nervous system.

At a Glance

  • Spina Bifida occurs 1 in every 1000 births nationwide.
  • Spina Bifida is the most common disabling congenital birth defect in the United States.
  • With medical advances, today children born with Spina Bifida can lead full lives.

For more information about Spina Bifida, visit


The word hydrocephalus is from the Greek words hydro meaning water and cephalus means head. Cerebral spinal fluid is the substance that protects the brain and spinal cord. When a person has hydrocephalus, this fluid is not able to flow freely and will build up inside the head causing pressure on the brain. Although hydrocephalus is treatable, it is a chronic condition that often requires multiple surgeries, which can diminish quality of life. While hydrocephalus is diagnosed in people of all ages, it affects approximately 1 out of every 500 children. Additionally, 80-90 percent of children with spina bifida will develop it. Other causes include tumors, cysts, viral and bacterial infections, and premature births.

At a Glance

  • Affects 1 million Americans
  • One to two out of every 1,000 babies is born with hydrocephalus
  • Most common reason for brain surgery in children
  • The only known treatment is neurosurgical, which has barely changed since 1952
  • Requires 40,000 surgeries per year in the U.S. - every 15 minutes
  • Surgerical treatment costs exceed $1 billion per year
  • Federal government spends less than $1 million per year on research

For more information about hydrocephalus, visit

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