About 1 in 2,860 pregnancies in California is diagnosed with spina bifida, an opening in the spinal cord and backbone.
Most people with spina bifida are physically handicapped but mentally normal. The body lacks sensation and muscle control below the defect, and many people with spina bifida use wheelchairs. There are also problems with bowel and bladder control. Almost all children with spina bifida develop extra spinal fluid in the brain (hydrocephalus), which sometimes causes brain damage and mental retardation.
About 20% of affected babies die—usually when the spinal opening is very large, very high up, becomes infected or if other serious birth defects are present. Survivors require a lifetime of medical care and other services, averaging $367,000.
Expanded AFP screening, a prenatal blood test, can detect about 80% of pregnancies with spina bifida. Prenatal diagnosis is also possible with ultrasound and/or amniocentesis.
Spina bifida is a neural tube defect. The neural tube—the precursor to the brain and spinal cord—normally forms about 2-3 weeks after conception, often before a woman misses her period and realizes she might be pregnant. For this reason, we look for risk factors in the “periconception” period, including the month before the pregnancy began.