Spina Bifida Awareness

October is Spina Bifida Awareness Month, and in honor of this designation, we asked Esther Mitchie, RN, CPN, nurse cooridnator for Le Bonheur's Spina Bifida Clinic to answer some questions about the condition that affects many of our patients. Mitchie often refers to the Spina Bifida Association, which offers value information about the birth defect.

What is spina bifida?
Spina bifida literally means "split spine" and happens when a baby is in the womb and the spinal column does not close all of the way. Spina bifida is the most common birth defect that disables people for life. Every day, about eight babies born in the United States have spina bifida or a similar birth defect of the brain and spine.

What causes spina bifida?
No one knows for sure. Scientists believe that genetic and environmental factors act together to cause the condition.

Mothers with uncontrolled diabetes (extremely elevated blood glucose levels) during pregnancy have an increased risk of having a baby with spina bifida.

Are there different types of spina bifida?
Yes. The four types are:

Occult Spinal Dysraphism (OSD)
Infants with this have a dimple in their lower back. Because most babies with dimples do not have OSD, a doctor has to check using special tools and tests to be sure. Other signs are red marks, tufts of hair or small lumps. In OSD, the spinal cord may not grow the right way and can cause serious problems as a child grows up. Infants who might have OSD should be seen by a doctor, who will recommend tests.

Spina Bifida Occulta
It is often called "hidden spina bifida" because about 15 percent of healthy people have it and do not know it. Spina bifida occulta does not cause harm and has no signs. With this type, the spinal cord and nerves are fine. People usually find out they have it after having an X-ray of their back.

Meningocele
It causes part of the spinal cord to come through the spine like a sac that is pushed out. Nerve fluid is in the sac, and there is usually no nerve damage. Individuals with this condition may have minor disabilities.

Myelomeningocele (Meningomyelocele)
This is the most severe form of spina bifida. It happens when parts of the spinal cord and nerves come through the open part of the spine, causing nerve damage and other disabilities. Seventy to 90 percent of children with this condition also have too much fluid on their brains. This happens because fluid that protects the brain and spinal cord is unable to drain like it should, so it builds up, causing pressure and swelling.

How is spina bifida treated?
Treatments vary depending on the type of spina bifida. A child with meningomyelocele usually require surgery within two to three days of birth to prevent infections and help save the spinal cord from more damage.

A child with meningocele usually has surgical treatment, and more often than not, the child is not paralyzed. Most children with this condition grow and develop normally, but they should be checked by a doctor for other serious problems often associated with this type.

A child with OSD should see a surgeon. Most experts think that surgery is needed early to keep nerves and the brain from becoming more damaged as the child grows.

Spina bifida occulta does not need to be treated.

What can you do to prevent spina bifida?
Women who are old enough to have babies should take folic acid before and during the first three months of pregnancy. Because half of the pregnancies in the U.S. are unplanned, the Spina Bifida Association suggests that women to take a vitamin with 400 mcg (0.4 mg) of folic acid each day during their reproductive years. Women who have a child or sibling with spina bifida, have had an affected pregnancy or have spina bifida themselves should take 4000 mcg (4.0 mg) of folic acid for one to three months before and during the first three months of pregnancy.

What is folic acid?
Folic acid is a vitamin that the body needs to grow and be healthy. It is found in many foods, but the man-made or synthetic form in pills is actually better absorbed by our bodies.

What conditions are associated with spina bifida?
Children and young adults with spina bifida can have mental and social problems. They also can have problems with walking or going to the bathroom. Children with spina bifida are also more prone to have a latex allergy, weight issues, skin breakdown, gastrointestinal disorders, learning disabilities, depression, tendonitis and sexual issues.

What physical limitations exist?
People with spina bifida must learn how to get around on their own without help using crutches, braces or a wheelchair. With help, it also is possible for children to learn how to go to the bathroom on their own. Doctors, nurses, teachers and parents should know what a child can and cannot do so they can help the child (within the limits of safety and health) be independent, play with other kids and take care of him or herself.

Can spina bifida be detected before birth?
Yes. There are three tests.

1. A blood test during the 16th to 18th weeks of pregnancy, called the alpha-fetoprotein (AFP) screening test detects level of AFP, which are usually higher in about 75-80 percent of women who have a fetus with spina bifida.

2. An ultrasound of the fetus, also called a sonogram, can show signs of spina bifida such as the open spine.

3. A test called maternal amniocentesis -- where a small amount of the fluid from the womb is taken through a thin needle -- can be used to look at protein levels, which help determine whether or not the baby has spina bifida.
Parents should know that no medical test is perfect, and results are not always accurate.

Can children with spina bifida grow up and live a full life?
Yes. With help, children with spina bifida can lead full lives. Most do well in school, and many play in sports. Because of today's medicine, about 90 percent of babies born with spina bifida now live to be adults, about 80 percent have normal intelligence and about 75 percent play sports and lead active lives.