Spina Bifida

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, and in some cases, after an extensive risk assessment of the mother and fetus, surgery can be performed before birth in an effort to repair or minimize the defect before birth.

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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.

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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

Occulta is the mildest form of the disease. Vertebrae are malformed but the spinal cord and its covering are undamaged. The condition typically doesn't cause disability or symptoms. About 5 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

Meningocele is more severe. The meninges — 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.

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Prenatal Testing

The following prenatal tests for pregnant women detect spina bifida before babies are born.

  • Alpha Fetoprotein (AFP) Test — AFP is the prenatal test most commonly used to detect spina bifida. This simple blood test is performed between 15 and 20 weeks of pregnancy. It measures levels of alpha fetoprotein (AFP), a protein released by the baby's liver, as well as human chorionic gonadotropin (hCG), a hormone produced during pregnancy, and estriol, another hormone produced in significant amounts during pregnancy. Abnormal results may indicate a spinal cord defect, such as spina bifida. It may also indicate fetal brain defects, multiple fetuses, a miscalculated due date or Down syndrome.

    Typically, AFP screening is performed by an obstetrician. If test results are high, the test may be repeated. If results still indicate a potential risk for birth defects, patients may be referred to the UCSF Prenatal Diagnosis Center for follow-up testing.
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Currently, there is no cure for spina bifida, but there are a number of treatments available to help manage the disease and prevent complications.

In some cases, if diagnosed before birth, the baby can undergo surgery while still in the womb in an effort to repair or minimize the spinal defect. The procedure is performed by fetal surgeons after an extensive risk assessment of mother and fetus.

Treatment after birth may include ongoing surgery, medications and physical and behavioral therapy, depending 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 typically can be treated without surgery. However, they may develop complications, such as bladder problems and hydrocephalus, or excessive fluid in the brain. If untreated, it may cause movement disorders or mental retardation.

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Reviewed by health care specialists at UCSF Benioff Children's Hospital.

Related Information

UCSF Clinics & Centers

Rehabilitation

Spina Bifida Program
1825 Fourth St., Fifth Floor
San Francisco, CA 94158
Phone: (415) 476-3899
Fax: (415) 502-7516
Appointment information

Fetal Treatment Center
1855 Fourth St., Second Floor, Room A-2432
San Francisco, CA 94158
Phone: (800) 793-3887
Fax: (415) 502-0660
Appointment information