Facts & FAQ’s

What is spina bifida? – Spina bifida is a type of birth defect known as a “neural tube defect.” It involves damage to the spine and nervous system. The vertebrae of the spine and the spinal cord are not formed properly. Spina bifida is the most common neural tube defect in the United States and affects 1,500 to 2,000 babies each year.

Individuals with spina bifida can experience loss of muscle function and sensation due to nerve damage. The severity of the involvement depends on where the malformation is located, since most nerves below that area are affected. The long-term effects frequently include weakness or paralysis of the legs, and problems with bowel and bladder control. Spina bifida is often accompanied by hydrocephalus (an accumulation of fluid within the brain), which is controlled by a surgical procedure relieving the fluid pressure.

Babies with spina bifida usually require surgery soon after birth to try to reduce damage to the nervous system. Several medical centers are conducting studies to see if prenatal surgery can lessen the effects of spina bifida. However, these surgeries cannot repair the damaged nerves. They can only try to prevent further deterioration. Affected individuals may require more neurologic, orthopedic and urologic surgeries as they age in order to maintain their health.

How is it diagnosed? – In most cases, spina bifida is diagnosed before birth. The most common methods used to look for spina bifida are maternal serum alpha fetoprotein (MSAFP) screening and fetal ultrasound. These tests are usually done during the second trimester. The MSAFP screen measures the amount of a protein called alpha-fetoprotein found in the mother’s bloodstream. If abnormally high levels of this protein are found it may indicate that the fetus has a neural tube defect. The MSAFP test is not specific for spina bifida and cannot definitively determine if there is a problem with the fetus. The doctor may request additional testing, such as ultrasound and amniocentesis, to help determine the cause.

Mild cases of spina bifida may not be diagnosed until after birth, often with routine X-ray examinations. Doctors may use magnetic resonance imaging (MRI) or a computed tomography (CT) scan to get a clearer view of the spine and vertebrae.

Can spina bifida be prevented? – Although no single cause of spina bifida has been found, studies have shown that certain levels of folic acid can greatly reduce the incidence of spina bifida. Folic acid, also called folate, is an important B vitamin in the development of a healthy fetus. By adding folic acid to their diets, women of childbearing age significantly reduce the risk of having a child with a neural tube defect such as spina bifida. Therefore, it is recommended that all women of childbearing age consume 400 micrograms of folic acid daily. Foods high in folic acid include dark green vegetables, egg yolks, and some fruits. Some foods are now fortified with folic acid. Also, many multivitamins contain the recommended dose of folic acid.

Women who have a child with spina bifida, have spina bifida themselves, or have already had a pregnancy affected by any neural tube defect are at greater risk of having a child with spina bifida or another neural tube defect. These women may require a higher amount of folic acid before they become pregnant.