Permanently disabling

Spina Bifida

Spina bifida is one of the most common permanently disabling birth defects in the United States. Spina bifida happens when the spine and back bones do not close all the way in a fetus (a baby still in the mother's womb). A sac of fluid comes through the opening in the baby's back. Much of the time, part of the spinal cord is in this sac, and it is damaged. This damage may occur within the first few weeks of pregnancy, often before a woman knows she is pregnant.

Among people with spina bifida, health issues can range from mild to severe. The amount of damage depends on the size and location of the opening in the spine, and which part of the spinal cord and nerves are affected.

Spina Bifida and CDC’s Work

National Spina Bifida Patient Registry: Medical care for patients with spina bifida varies throughout the country. Researchers in this program analyze anonymous data from 17 spina bifida clinics across the country to identify the health care services that may be most beneficial to patients. In collaboration with CDC’s nonprofit partners, researchers will share their findings with those who serve the spina bifida community, working towards a national standard of care.

About one in every 33 babies is born with a 

birth defect.

Spina Bifida and End Stage Renal Disease: Most children with spina bifida have normal kidney function at birth. However, most also have a neurogenic bladder (a bladder that does not function correctly because of damaged nerves in the spine). This impairment can affect kidney function. Existing literature indicates that without appropriate monitoring and intervention, approximately 50 percent of children with a neurogenic bladder will experience renal (kidney) deterioration within the first five years of life.⁶ CDC is analyzing information to describe the health status of persons who have both spina bifida and end stage renal disease.

South Carolina Study for Adolescents and Young Adults with Rare Conditions: This project will answer important questions about the health and well-being of young adults with rare conditions aged 15-24 years. Data from health, education, and social service agencies in South Carolina will be merged and analyzed to create a picture of health status, employment, education, and health care needs. Interviews of young adults and their families will also be included. Spina bifida is one of three conditions included in this project.