| SPINA BIFIDA |
| Spina Bifida means cleft spine, which is an incomplete closure in the spinal column. Spina Bifida occurs when the spinal cord, surrounding nerves and/or spinal column fail to develop normally during the first 28 days of gestation. The condition can affect the nervous, urinary, muscular and skeletal systems — often causing bowel and bladder complications and paralysis below the spinal defect. In general, the types of spina bifida (from mild to severe) are: 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. 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. 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 *see picture below 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. 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, a component of the Centers for Disease Control and Prevention (CDC), National Center for Health Statistics (NCHS), 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. In addition, a number of Spina Bifida pregnancies are voluntarily terminated and we cannot be certain how many pregnancies are terminated versus carried to term. Who is at risk for Spina Bifida? In the United States, there are 60 million women of childbearing age and each one is potentially at risk of having a pregnancy affected by Spina Bifida. Birth defects can happen in any family. In fact, 95% of neural tube defects (NTDs) occur in women with no personal or family history of NTDs. However, according to the CDC, some risk factors are known : ~A previous NTD-affected pregnancy increases a woman’s chance to have another NTD-affected pregnancy approximately 20 times; ~Maternal insulin-dependent diabetes; ~Use of certain anti-seizure medication (Valproic acid/Depakene, and Carbamazapine/Tegretol); ~Medically diagnosed obesity; ~High temperatures in early pregnancy (i.e., prolonged fevers and hot tub use); ~Race/ethnicity (NTDs are more common among white women than black women and more common among Hispanic women than non-Hispanic women); and ~Lower socio-economic status ~possible genetic influence (unproven thus far) ~radiation ~excess glucose ~congenital rubella ~chromosomal abnormalities ~folic acid deficiencies Characteristics The effects of myelomeningocele, the most serious form of spina bifida, may include muscle weakness or paralysis below the area of the spine where the incomplete closure (or cleft) occurs, loss of sensation below the cleft, and loss of bowel and bladder control. In addition, fluid may build up and cause an accumulation of fluid in the brain (a condition known as hydrocephalus). A large percentage (70%-90%) of children born with myelomeningocele have hydrocephalus. Hydrocephalus is controlled by a surgical procedure called "shunting," which relieves the fluid buildup in the brain. If a drain (shunt) is not implanted, the pressure buildup can cause brain damage, seizures or blindness. Hydrocephalus may occur without spina bifida, but the two conditions often occur together. 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 catheterize 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. Section 504 of the Rehabilitation Act of 1973 requires that programs receiving federal funds make their facilities accessible. This can occur through structural changes (for example, adding elevators or ramps) or through schedule or location changes (for example, offering a course on the ground floor). 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. POSSIBLE INTERVENTIONS for MYELOMENINGOCELE Immediate action needs to be taken when a baby is born with myelomeningocele. It is possible to detect myelomeningocele before birth via a test of the mother's blood for the presence of alpha-fetoprotein, AFT. This protein leaks from the developing spine into the amniotic fluid and subsequently into the mother's bloodstream. At birth, a baby with myelomeningocele may have an exposed spinal cord (80% of cases) which puts the baby at immediate risk for developing bacterial meningitis. Surgery to close the spinal opening and lessen the chance of infection happens pretty quickly. Hydrocephalus accompanies myelomeningocele at least 25% of the time. Moreover, 80% to 90% of babies born with myelomeningocele develop hydrocephalus after they are born. Surgery to alleviate the pressure on the brain from excess spinal fluid is diverted to the peritoneum via a shunt (ventriculoperitoneal shunt). Further, children with myelomeningocele may have paralysis below the site of the lesion. Bowel and bladder control are an issue to deal with when the child grows older. Also, physical and occupational therapists can help the child deal with paralysis and can also fit the child with assistive technological devices to aid their education. About 450,000 people in the United States live with spinal cord injury. From 85% to 90% of patients treated for spinal cord injuries are young men between the ages of 16 and 30. The incidence increases in the summer months. Injuries typically occur in the early hours of the morning. Common causes: *motor vehicle accidents (38.5%) *violence (guns) (24.5%) *falls (21.8%) 25% of spinal cord injuries are alcohol related. Only 7.2% of spinal cord injuries are caused by sporting activities. OTHER Spinal Cord Injuries Spinal cord injury is an injury in which the spinal cord is traumatized or transected. Monoplegia -- one limb paralysis Paraplegia -- paralysis that involves the legs only. Quadriplegia -- paralysis that involves all four extremities and usually the trunk also. Hemiplegia -- paralysis that involves only one side of the body. Triplegia -- three appendages or limbs, usually both legs and one arm Diplegia -- legs more affected than arms Double hemiplegia -- both halves of the body are affected, but one side more severely. |
| above, Myelomeningocele. To the right, spina bifida occulta. Far right, meningocele with a copyright, so www.fotosearch.com. Underneath, hydrocephalus |
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