Spina Bifida

DISABILITY CATEGORY

Other Health Impairments—Spina Bifida, neural tube defects

TYPES

DEFINITION

Our nation’s special education law, the Individuals with Disabilities Education Act (IDEA) defines diabetes under “other health impairment,” which means…

“…having limited strength, vitality, or alertness, including a heightened alertness to environmental stimuli, that results in limited alertness with respect to the educational environment, that is due to chronic or acute health problems such as asthma, attention deficit disorder or attention deficit hyperactivity disorder, diabetes, epilepsy, a heart condition, hemophilia, lead poisoning, leukemia, nephritis, rheumatic fever, sickle cell anemia and Tourette syndrome; and adversely affects a child’s educational performance.”

[34 code of Federal Regulations §300.8(c)(9)]

Other Definitions

Spina bifida (SB) is a neural tube defect (a disorder involving incomplete development of the brain, spinal cord, and/or their protective coverings) caused by the failure of the fetus's spine to close properly during the first month of pregnancy. Infants born with SB sometimes have an open lesion on their spine where significant damage to the nerves and spinal cord has occurred. Although the spinal opening can be surgically repaired shortly after birth, the nerve damage is permanent, resulting in varying degrees of paralysis of the lower limbs. Even when there is no lesion present there may be improperly formed or missing vertebrae and accompanying nerve damage. In addition to physical and mobility difficulties, most individuals have some form of learning disability.

The three most common types of SB are: myelomeningocele, the severest form, in which the spinal cord and its protective covering (the meninges) protrude from an opening in the spine; meningocele in which the spinal cord develops normally but the meninges protrude from a spinal opening; and occulta, the mildest form, in which one or more vertebrae are malformed and covered by a layer of skin. SB may also cause bowel and bladder complications, and many children with SB have hydrocephalus (excessive accumulation of cerebrospinal fluid in the brain). (NINDS, 2012).

FACTS AND STATS

Spina Bifida occurs in 7 out of every 10,000 live births in the United States. Birth certificate data from the National Vital Statistics System, and component of the CDC, indicate a drop in the rate of spina bifida; however, spina bifida is considered to be underreported on birth certificates so the drop in the rate could be due to lack of reporting, not an actual decrease in occurrence. (SBAA, 2011) 

CAUSES

No one knows the cause for sure. Scientists believe that genetic and environmental factors act together to cause the condition. (SBAA, 2011).

PREVENTION

Women who are old enough to have babies should take 400 mcg (.4 mg) of folic acid before and during the first three months of pregnancy. 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. (SBAA, 2011).   

CHARACTERISTICS

Physical Symptoms

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 relatively 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. There may be no motor or sensory impairments evident at birth. Subtle, proressive neurologic deterioration often becomes evident in later childhood or adulthood. In many instances, spina bifida occulta is so mild that there is no disturbance of spinal function at all. Occulta can be diagnosed at any age.

Meningocele: The protective coatings (meninges) come through the open part of the spine like a sac that is pushed out. Cerebrosprinal fluid is in the sac and there is usually no nerve damage. Individuals may suffer minor disabilities. Additional problems can develop later in life.

Myelomeningocele: This form of spinal bifida 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 spinal bifida, which causes nerve damage and more severe disabilities (SBAA, 2011)

Conditions Associated with Spina Bifida

Children and young adults with spina bifida can have mental and social problems. They also can have problems with walking and getting around or going to the bathroom, latex allergy, obesity, skin breakdown, gastrointestinal disorders, learning disabilities, depression, tendonitis and sexual issues. (SBAA, 2011) 

MEDICAL TREATMENT

There is no cure for spina bifida because the nerve tissue cannot be replaced or repaired. Treatment for the variety of effects of spina bifida may include surgery, medication, and physiotherapy. Many individuals with spina bifida will need assistive devices such as braces, crutches, or wheelchairs. Ongoing therapy, medical care, and/or surgical treatments may be necessary to prevent and manage complications throughout the individual’s life. Surgery to close the newborn’s spinal opening is generally performed within 24 hours after birth to minimize the risk of infection and to preserve existing function in the spinal cord. (NINDS, 2012).

A child with meningomyelocele usually is operated on within two to three days of birth. This prevents infections and helps save the spinal cord from more damage.

A child with meningocele usually has it treated with surgery, and more often than not, the child is not paralyzed. Most children with this condition grow up fine, but they should be checked by a doctor because they could have other serious problems, too.

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.

Spinal bifida occulta does not need to be treated. (SBAA, 2011)

PROGNOSIS

The prognosis for individuals with spina bifida depends on the number and severity of abnormalities. Prognosis is poorest for those with complete paralysis, hydrocephalus, and other congenital defects. With proper care, most children with spina bifida live well into adulthood. (NINDS, 2012).

EDUCATIONAL IMPLICATIONS

Although spina bifida is relatively common, until recently most children born with a myelomeningocele died shortly after birth. Now that surgery to drain spinal fluid and protect children against hydrocephalus can be performed in the first 48 hours of life, children with myelomeningocele are much more likely to live. Quite often, however, they must have a series of operations throughout their childhood. School programs should be flexible to accommodate these special needs.

Many children with myelomeningocele need training to learn to manage their bowel and bladder functions. Some require catheterization, or the insertion of a tube to permit passage of urine. The courts have held that clean, intermittent catheterization is necessary to help the child benefit from and have access to special education and related services. A successful bladder management program can be incorporated into the regular school day. Many children learn to catheterized themselves at a very early age.

In some cases, children with spina bifida who also have a history of hydrocephalus experience learning problems. They may have difficulty with paying attention, expressing or understanding language, and grasping reading and math. Early intervention with children who experience learning problems can help considerably to prepare them for school.

Successful integration of a child with spina bifida into school sometimes requires changes in school equipment or the curriculum. In adapting the school setting for the child with spina bifida, architectural factors should be considered. This can occur through structural changes (for example, adding elevators or ramps) or through schedule or location changes.

Children with myelomeningocele need to learn mobility skills, and often require the aid of crutches, braces, or wheelchairs. It is important that all members of the school team and the parents understand the child's physical capabilities and limitations. Physical disabilities like spina bifida can have profound effects on a child's emotional and social development. To promote personal growth, families and teachers should encourage children, within the limits of safety and health, to be independent and to participate in activities with their nondisabled classmates. (NICHCY, 2004) 

ORGANIZATIONS

Spina Bifida Association of America

4590 MacArthur Boulevard, NW., Suite 250
Washington, DC 20007-4226
Telephone: (202) 944-3285 or (800) 621-3141
www.sbaa.org/site/PageServer?pagename=index

Since 1973, SBAA is dedicated to enhancing the lives of those with spina bifida and those whose lives they touch. Through its network of 57 chapters, SBA has a presence in more than 125 communities nationwide and serves thousands of people each year.

SBA’s programs give hope and strength to people confronted with the challenges of spina bifida. 

RESOURCES

Websites for Parents

Websites for Children