Spina bifida is the most common permanently disabling birth defect in the United States, affecting about one out 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 doesn't close completely. The condition can be diagnosed before a baby is born.
Most children with this birth defect survive but develop disabilities which may include 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 where the opening is located 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 people with spina bifida now live longer — well into adulthood — and have a better quality of life, even though they may need lifelong treatment.
Symptoms of spina bifida depend on the type of the disease and how severely the spinal cord and surrounding nerves are affected.
Spina bifida occulta is the mildest form of the disease. In spina bifida occulta, one or more vertebrae are malformed but the spinal cord and its covering are undamaged. The condition typically doesn't cause disability or symptoms. About five to 10 percent of the population may have spina bifida occulta, but are unaware of it. In many cases, the only visible signs are an abnormal tuft of hair, birthmark or dimple at the defect.
Spina bifida meningocele is a more severe form of the disease. In this form, the meninges — the membranes that cover and protect the spinal cord — protrude from the spinal opening and form a fluid-filled sac visible on a baby's back. The sac may be covered by a thin layer of skin. Some babies have few or no symptoms, while others experience complications, such as partial paralysis and urinary and bowel dysfunction.
The following prenatal tests are available to pregnant women to detect spina bifida before their babies are born.
Currently, there is no cure for spina bifida, but there are a number of treatments available to help manage the disease and prevent complications.
Treatment may include ongoing surgery, medications and physical and behavioral therapy. The treatment depends on the type and severity of the defect, your child's age and overall health as well as personal preferences.
Children with the mildest form of the disease, spina bifida occulta, usually don't need treatment. Children with spina bifida meningocele can typically be treated without surgery. However, these children may develop complications, such as bladder problems and hydrocephalus, or excessive fluid in the brain. If untreated, it may cause motor or movement disorders or mental retardation. Fluid can be drained from the brain through a surgical procedure that uses a special tube called a shunt. The shunt runs under the skin into the abdomen and the fluid passes into the child's body without harm.
Reviewed by health care specialists at UCSF Benioff Children's Hospital.
Last updated
June 17, 2010
Spina Bifida Program
400 Parnassus Ave., Second Floor
San Francisco, CA 94143
Phone: (415) 476-3899
Fax: (415) 502-7516
Appointment information