About Spina Bifida

Q. What Causes Spina Bifida?

The cause of Spina Bifida is not known with certainty. However, scientists believe that genetic and environmental factors act together to cause the condition.

Q. Are There Different Types of Spina Bifida?

Yes - Occult Spinal Dysraphism (OSD), Occulta, Meningocele, and Myelomeningocele

Q. What is Occult Spinal Dysraphism (OSD)?

In OSD infants have visible anomalies on the lower back and underlying problems of the spinal cord. The most common anomaly is a dimple. Although most dimples in babies are not associated with OSD, a dimple may be the opening of a sinus tract and may be associated with it. Other birthmarks commonly associated with OSD include red raised marks (hemangioma), flat reddish marks (flame nevus), tufts of hair, or small lumps (masses). A dermal sinus may serve as a tract for bacteria into the spinal canal that can lead to meningitis. In OSD the spinal cord itself may be tethered to surrounding tissue, or may be split, all of which can lead to subsequent neurological damage as the child grows. Or the spinal cord may have a benign fatty tumor (lipoma) bound to it, which also can lead to neurological damage. Infants who have these stigmata on their backs should have a thorough neurological evaluation as well as imaging of the underlying soft tissue and spinal cord using MRI scan (or ultrasonography if the radiologist is experienced).

Q. What is Spina Bifida Occulta?

Spina Bifida occulta occurs in approximately 15% of healthy people and is often called hidden Spina Bifida. In this harmless condition, which does not cause symptoms, the spinal cord and nerves are normal and there is no opening on the back. People are not aware that they have this unless a radiogram (x-ray) of the back is taken.

Q. What is Meningocele

In this condition, the protective coating of the spinal cord (meninges) comes through the open part of the spine like a sac that is pushed out. Cerebrospinal fluid is in the sac and there is usually no nerve damage. Individuals may have minor disabilities.

Q. What is Myelomeningocele?

This condition occurs when the meninges (protective covering of the spinal cord) and spinal nerves come through the open part of the spine. This is the most serious type of Spina Bifida, and causes nerve damage and more severe disabilities. Hydrocephalus, or water on the brain, occurs in 70–90 percent of children with myelomeningocele. This happens when the cerebrospinal fluid, which cushions and protects the brain and spinal cord, is unable to drain normally. Fluid collects in and around the brain, causing increased pressure and swelling within the brain. Without treatment, the head becomes enlarged, and mental retardation may result. Hydrocephalus also occurs in children who do not have Spina Bifida.

Q. How Is Spina Bifida Treated?

A child with Myelomeningocele usually is operated on within two to three days of birth. Surgery is performed to prevent infection and to preserve existing function in the spinal cord.

Meningocele, which does not involve the spinal cord, can be repaired surgically, usually with no paralysis. Although most children with meningocele develop normally, affected children should be evaluated for hydrocephalus and bladder problems so they may be treated properly.

A child with an underlying abnormality of soft tissue or cord (indicating OSD) should be referred to a pediatric neurosurgeon, since most clinicians believe that surgical treatment should be performed early, even in asymptomatic infants, to prevent progressive neurological damage.

Spina Bifida occulta requires no treatment.

Q. Can Anything Be Done To Prevent Spina Bifida?

Yes. Recent studies have shown that if all women of child-bearing age were to consume 400 micrograms (mcg), also written as 0.4 milligrams (mg), of folic acid prior to becoming pregnant and throughout the first trimester of pregnancy, the occurrence of Spina Bifida could be reduced by up to 70 percent.

Because half of the pregnancies in the United States are unplanned, the SBA encourages women to take a multivitamin containing 400 mcg of folic acid each day throughout their reproductive years. In addition, women at increased risk for Spina Bifida (women who have a child or sibling with Spina Bifida, have had an affected pregnancy, or have Spina Bifida themselves) should take 4,000 mcg, also written as 4.0 mg, of folic acid by prescription for one to three months before becoming pregnant, and through the first three months of the pregnancy.

Q. What Is Folic Acid?

Folic acid, a common water-soluble B vitamin, is essential for the functioning of the human body. During periods of rapid growth, such as pregnancy and fetal development, the body's requirement for this vitamin increases. It is found naturally in green leafy vegetables; the synthetic form is actually better absorbed in the body.

Q. What Conditions Are Associated With Spina Bifida?

Special attention is needed to identify and treat conditions associated with Spina Bifida. Due to the wide range of neurological damage and mobility impairments, it can be difficult to identify some secondary conditions. Attention should be focused on the psychological and social development of children and young adults with Spina Bifida. Conditions associated with Spina Bifida include mobility impairments, bowel and bladder complications, latex allergy, obesity, skin breakdown, gastrointestinal disorders, learning disabilities, depression, tendonitis, and social and sexual issues.

Q. What Physical Limitations Exist?

Persons with Spina Bifida need to learn mobility skills and, with the use of crutches, braces, or wheelchairs, can achieve more independence. Also, with new techniques, children can become independent in managing their bowel and bladder problems. Physical disabilities like Spina Bifida can have profound effects on a child's emotional and social development. It is important that health care professionals, teachers and parents understand the child's physical capabilities and limitations. To promote personal growth, they should encourage children (within the limits of safety and health) to be independent, to participate in activities with their non-disabled peers and to assume responsibility for their own care.

Q. Can Spina Bifida Be Detected Before Birth?

Yes. There are three prenatal tests can be done to detect Spina Bifida.

First, most women in the United States have blood drawn during the 16th to 18th weeks of pregnancy to check for blood levels of a protein called alpha-fetoprotein (AFP screening test), which is elevated in about 75–80% of women having fetuses with Spina Bifida.

Second, ultrasound (sonograms) of the fetus can detect signs of Spina Bifida such as the open spine.

Finally, maternal amniocentesis, in which a small sample of the amniotic fluid is withdrawn through a thin needle, can detect alpha-fetoprotein and another protein.

Unfortunately, there are limitations on any test, and these tests do not identify every single child with Spina Bifida.

Q. What Is the Long-Term Outlook for Children With Spina Bifida?

Fortunately, with the proper health care, children with Spina Bifida can lead active and productive lives. Most are successful in school and many are actively involved in modified sports activities despite their physical challenges. Due to medical and surgical interventions over the last 40 years, approximately 90 percent of babies born with Spina Bifida now survive into adulthood, approximately 80 percent have normal IQ scores, and approximately 75 percent are in competitive sports and recreational activities.