Our nation’s special education law, the Individuals with Disabilities Education Act (IDEA) includes spina bifida under “orthopedic impairment,” which means...
“…a severe orthopedic impairment that adversely affects a child's educational performance. The term includes impairments caused by congenital anomaly, impairments caused by disease (e.g., poliomyelitis, bone tuberculosis, etc.), and impairments from other causes (e.g., cerebral palsy, amputations, and fractures or burns that cause contractures).”
[34 Code of Federal Regulations §300.8(c) (8)]
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. The literal meaning for spina bifida is “split spine.” 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.
SB may also cause bowel and bladder complications, and many children with SB have hydrocephalus (excessive accumulation of cerebrospinal fluid in the brain).
The most commons types of Spina Bifida include:
- Occulta (mild) – one or more vertebrae are malformed and covered by a layer of skin; about 15% of healthy people have it and do not know it; detectable through an X-ray of the back.
- Meningocele (moderate) – the spinal cord develops normally, but the meninges (protective covering of the spinal cord) protrude from a spinal opening
- Myelomeningocele (severe; also called Spina bifida cystica) – the spinal cord and its protective covering (the meninges) protrude from an opening in the spine; 70-90% of children with this condition have too much cerebrospinal fluid in the brain because it is unable to drain like it should, causing pressure and swelling.
Other variations of Spina bifida include:
- Occult Spinal Dysraphism (OSD)
- Fatty filum terminale
- Split cord malformation
- Terminal myelocystocele
FACTS AND STATS
Spina bifida is the most common neural tube defect in the United States, affecting 1,500-2,000 of the more than 4 million babies born each year. An estimated 166,000 individuals with spina bifida live in the United States.
No one knows the cause for sure. Scientists believe that genetic and environmental factors act together to cause the condition.
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. Research shows that the likelihood of having a second baby with spina bifida is about 3%.
- 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, progressive 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.
Spina bifida is detectable before birth, although it is important to remember that no medical test is perfect and the results are not always 100% accurate. Spina bifida can be detected in utero by one of the following tests:
- Blood test during the 16th-18th weeks of pregnancy called the alpha fetoprotein (AFP) screening test.
- An ultrasound of the fetus.
- Maternal amniocentesis test where a small amount of fluid from the womb is taken through a thin needle to look at protein levels.
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.
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.
The prognosis for individuals with spina bifida depends on the number and severity of abnormalities. Most children with the disorder have normal intelligence and can walk, often with assistive devices. 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.
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.
(Center for Parent Information Resources, CPIR, 2015; Also see SPA for education information and resources for educators, parents, and individuals living with SB. Also contact the organization’s National Resource Center at email@example.com)
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.
Last updated March 2020.