What is Spina Bifida?
Spina Bifida occurs within the first month of pregnancy resulting in an incomplete closure of the spinal column. Spina Bifida is the most frequently occurring permanently disabling birth defect affecting approximately one out of every 1,000 newborns in the United States.
What Causes Spina Bifida?
The cause of Spina Bifida is not known with certainty, however, scientists believe that genetic and environmental factors may act together to cause Spina Bifida.
Are There Different Types of Spina Bifida?
Yes. There are three forms:
Occulta
Often called hidden Spina Bifida, the spinal cord and the nerves are usually normal and there is no opening on the back. In this usually harmless form of Spina Bifida, there is a small defect or gap in a few of the small bones (vertebrae) that make up the spine. The underlying neural tube defect is completely covered with skin. Frequently, there are telltale signs on close examination of the back. There may be a defect in the vertebrae of spine bones, or the skin overlying the defect may be dimpled, thickened, pigmented, or hairy. In some cases there may be a soft swelling overlying the spine, composed of fatty tissue (lipoma). Not frequently, the fatty tissue extends into the spinal canal, where it can expand and press on the spinal cord. Although there may be no motor or sensory impairments evident at birth, subtle, progressive neurologic deterioration often becomes evident in later childhood or adulthood.
In many instances, however, Spina Bifida occulta is so mild that there is no disturbance of spinal function at all. The arches of the vertebrae may be incomplete, but the spinal cord itself is normal. Spina Bifida occulta of this sort probably occurs in 3-5 percent of the population and is usually a chance finding that is of no clinical significance. People often don't even know they have it.
Meningocele
The protective coatings (meninges) come 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 suffer minor disabilities. New problems can develop later in life.
Myelomeningocele(This is the form I was born with)
This 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, which causes nerve damage and more severe disabilities. Hydrocephalus, or water on the brain, often occurs in 70 to 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 because of the spinal defect. Fluid collects in and around the brain, causing the head to become enlarged. Without treatment mental retardation may result. Hydrocephalus also occurs in children who do not have Spina Bifida.
How is Spina Bifida Treated?
A child with the most severe form of Spina Bifida usually is operated on within 24 hours after birth. Surgery is generally performed to minimize the risk of 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 in order that they may be treated properly.
Spina Bifida occulta, in most cases, usually requires no treatment.
Can Anything Be Done to Prevent Spina Bifida?
Yes. Recent studies have shown that if all women of childbearing age were to consume400 micrograms (mcg), also written as 0.4 milligrams (mg), of folic acid prior to becoming pregnant and throughout the first trimester of pregnancy, the incidence of Spina Bifida could be reduced by up to 75%.
With half of the pregnancies in the United States unplanned, SBAA 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 with Spina Bifida, have had an affected pregnancy, or have Spina Bifida themselves) should take 4000 micrograms (mcg), also written as 4.0 milligrams (mg), of folic acid by prescription for 1 to 3 months before becoming pregnant.
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.
What Conditions Are Associated With Spina Bifida?
Special attention is needed to identify and treat condition 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, tendonitis, obesity, skin breakdown, gastrointestinal disorders, learning disabilities, depression, and social and sexual issues.
What Physical Limitations Exist?
Persons with Spina Bifida need to learn mobility skills and often, 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 the 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.
Can Spina Bifida Be Detected Before Birth?
Yes. There are three prenatal tests that can be done to detect Spina Bifida.
1. First, most women in the United States have blood drawn during the 16-18 th 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.
2. Second, ultrasound (sonograms) of the fetus can detect signs of Spina Bifida such as the open spine.
3. Finally, maternal amniocentesis, in which a small sample of the amniotic fluid is withdrawn through a thin needle, can detect alpha-fetoprotein or another protein. Unfortunately, there are limitations on any test, and these tests do not identify a child with Spina Bifida in every single case.
What is the Long-Term Outlook for Children With Spina Bifida?
Fortunately, with the proper medical 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% of babies born with Spina Bifida survive into adulthood, approximately 80% have normal IQ scores, and approximately 75% are in competitive sports and recreational activities.
