What Is Spina Bifida?

Spina Bifida, which literally translates to split spine, is the most common permanently disabling birth defect in the United States. It is caused by the failure of the fetus's spine to close properly during the first month of pregnancy. A form of neural tube defect (NTD), Spina Bifida affects 7 out of every 10,000 live births and it is estimated that over 70,000 people are currently affected by it in the U.S. While there is no known cure for nerve damage caused by Spina Bifida, the Centers for Disease Control have identified certain risk factors, including the use of certain drugs, which may increase the chance of developing it.

Three types of Spina Bifida

According to the Spina Bifida Association (SBAA), there are three types of Spina Bifida – Occulta, Meningocele and Myelomeningocele:

• Spina Bifida Myelomeningocele. 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 the most severe disabilities.
• Spina Bifida Meningocele. This occurs when 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 and additional problems can develop later in life.
• Spina Bifida Occulta. This is often called 'hidden Spina Bifida' because there may be no motor or sensory impairments evident at birth. It is associated with a subtle, progressive neurologic deterioration which often becomes evident in later childhood or adulthood.

Spina Bifida side effects & costs

Side effects from Spina Bifida may include an incomplete development of the brain or spinal cord, bowel and bladder complications, learning disabilities, nerve damage and varying degrees of paralysis in lower limbs which may require the use of braces, crutches or wheelchairs and ongoing therapy. The SBAA estimates that the extra costs associated with Spina Bifida's side effects may exceed $1,000,000 in a person's lifetime.

Who's at risk?

Unfortunately, anyone is potentially at risk for developing Spina Bifida. In fact, it is estimated that 95% of neural tube (the embryonic structure that eventually develops into the baby's brain and spinal cord and the tissues that enclose them) defects occur in women with no personal or family history of NTDs. However, the Centers for Disease Control (www.cdc.gov) list the following risk factors:

• A previous NTD-affected pregnancy increases a woman's chance to have another NTD-affected pregnancy by approximately 20 times;
• High temperatures in early pregnancy such as prolonged fevers and hot tub use;
• Lower socio-economic status;
• Maternal insulin-dependent diabetes;
• Medically diagnosed obesity;
• Race/ethnicity (NTDs are more common among white women than black women and more common among Hispanic women than non-Hispanic women);
• Use of certain anti-seizure medications (Valproic acid/Depakene, Depakote and Carbamazapine/Tegretol).

No known Spina Bifida cure

There is no known cure for nerve damage caused by Spina Bifida. The effected area can be surgically closed after birth; however, the operation does not restore normal function to the spine. While intrauterine surgery (performed on the fetus) has been done, the safety of it is still being investigated.

Helpful links to additional information

• The Spina Bifida Association
• The Mayo Clinic
• National Institute of Neurological Disorders and Stroke
• National Dissemination Center for Children with Disabilities