Learn more about the National Spina Bifida Program
Spina bifida is one of the most common, permanently disabling birth defects in the United States. Learn more about the National Spina Bifida Program and its efforts to help people with spina bifida live to their fullest potential.
Spina bifida is one of the most common, permanently disabling birth defects in the United States. It occurs within the first few weeks of pregnancy, often before a woman knows she is pregnant. It happens when the spine and back bones 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.
Most children born with spina bifida live full lives, though they often have lifelong disabilities and need many surgeries. Children born with spina bifida don't all have the same needs. Some children have problems that are much more severe than others. 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 has created many programs and resources to help people with spina bifida live to their fullest potential. Working closely with the Spina Bifida Association, we focus on improving mental and physical health, increasing independence, and increasing social participation for people with spina bifida throughout life. The National Spina Bifida Program’s major projects include:
The Natural History of Spina Bifida in Children
This project will help us learn more about what life is like growing up with spina bifida so that we can better understand the needs of children with spina bifida.
Spina Bifida Clinical Care Network
This national network supports research and helps improve health care of people who have spina bifida. Through this network, we are creating a patient registry and an electronic medical record.
Spina Bifida from Childhood to Adulthood: Transition Projects
Many people with spina bifida feel overwhelmed as they age and transition from childhood to adolescence to adulthood. We are working on a “Transition Checklist” for families to help their children as they grow up. The checklist will include things like taking care of personal needs, developing relationships, and doing their best in school. We are also working on guidance and resources for families and healthcare providers to address developmental milestones.
Other Projects
The National Spina Bifida Program is also working on these projects:
- Researching bowel and bladder problems
- Finding out how many people have spina bifida
- Understanding the medical costs of spina bifida
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