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National Spina Bifida Program

Each year, about 1,500 babies are born with spina bifida. Spina bifida happens when the spine and back bones of a fetus (a baby still in the mother's womb) do not close all the way. A sac of fluid comes through an opening in the baby's back. Much of the time, part of the spinal cord is in this sac, and it is damaged. This occurs within the first few weeks of pregnancy, often before a woman knows she is pregnant.

Photo: A boy in a wheelchair.Most children born with spina bifida live full lives, though they often have lifelong disabilities and need many surgeries. Children born with the condition don't all have the same needs. Some children may have severe problems such as bowel and bladder management, mobility, and learning challenges, while other children do not. Even so, with the right care, most of these children will grow up to lead full and productive lives.

Helping People With Spina Bifida Live to the Fullest

Since 2003, the National Spina Bifida Program at the CDC's National Center on Birth Defects and Developmental Disabilities has created many programs and resources to help people with spina bifida live to their fullest potential. Working closely with partners, CDC's work focuses on improving mental and physical health, encouraging independence, and promoting life activities. The National Spina Bifida Program's major projects are:

The Natural History of Spina Bifida Among Children

This project helps us learn more about what life is like growing up with spina bifida so that we can better understand what services will help children.

Spina Bifida Clinical Care Network

This national network supports research and helps improve the health care of people who have spina bifida. Through this network, we are creating a patient registry and electronic medical records to collect research data that will identify the best practices for clinicians working with spina bifida patients.

Spina Bifida From Childhood To Adulthood: Transition Projects

Many people with spina bifida feel lost and overwhelmed in the transitions from childhood to adolescence to adulthood. CDC has created a guide for families and clinicians to help children as they grow up. The guide covers topics such as becoming more self-sufficient, developing meaningful relationships, and being successful in school.

Other Projects

The National Spina Bifida Program also is working to:

  • Research bowel and bladder problems.
  • Find out how many people have spina bifida.
  • Understand the medical costs of spina bifida.

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