Spina Bifida

Spina bifida is the most common permanently disabling birth defect in the United States, affecting about one of every 1,000 pregnancies. An estimated 70,000 people live with the condition. It occurs in the first month of pregnancy when the spinal column of the fetus does not close completely. The condition can be diagnosed before a baby is born.

Most children with this birth defect survive, but develop disabilities including paralysis, difficulty controlling bowel and bladder function, hydrocephalus or excessive fluid in the brain, as well as impaired cognitive, learning, social and psychological development. The degree of disability is usually related to the location the opening occurs on the back. The higher the opening, the greater the impairment.

In most cases, the exact cause of spina bifida is unknown, although certain genetic and environmental factors may contribute to the condition. Due in part to improved treatments, many of those affected now have a better quality of life and longer life expectancy, living well into adulthood, even though they may need lifelong treatment.

UCSF's Spina Bifida Program is one of only a few programs in Northern California to offer comprehensive medical and social support and treatment to infants, children and adolescents with spina bifida and other spinal birth defects involving exposed vertebrae.

Experts from many areas of health care may be involved in your child's care, including those in neurosurgery, urology, orthopedics, pediatric physical medicine and rehabilitation, pediatric development and behavior, nutrition, nursing coordination and social work. Our goal is to create a treatment plan for your child to minimize disabilities so that he or she can lead an active and productive life.

Pediatric surgeons at UCSF Children's Hospital are involved in a five-year clinical trial, sponsored by the National Institutes of Health (NIH), to study surgery before birth as well as surgery after birth to determine the best treatment for spina bifida. For more information about this study, visit this Web site. The study is slated to continue through 2008.

To make an appointment, please call our Spina Bifida Program:

You may need a referral from your child's primary care doctor. Please check with your health insurance representative.

Reviewed by health care specialists at UCSF Children's Hospital.
Last updated May 21, 2007