Spina bifida occulta:
Brian was born with spina bifida occulta, the mildest form of spina bifida. "Occulta" means hidden, and in many cases, the gap in the spine is never detected. Often an opening in one or two of the vertebrae occurs, but the spinal cord is not affected. A dimple, a birthmark, or a patch of hair may be visible on the skin overlying the site of the gap.
Scientists estimate that up to 40 percent of all Americans have this form of spina bifida, but few ever know they have it. Most people with spina bifida occulta never need treatment. Brian was an exception. He needed surgery because as he grew, the lower end of his spinal cord got caught against his vertebrae, causing him to have problems controlling his bladder. The doctors "unhooked" the spinal cord and closed the gap surgically.
Spina bifida manifesta:
Spina bifida manifesta includes two forms of spina bifida that together represent onc of the most common disabling birth defects. On average, 1 out of 1,000 babies in the United States is born with one of these forms, cither meningocele (me-NING-go-seel) or myelomeningocele (MY-e-lo-me-NING-go-seel).
Meningocele:
Of babies born with spina bifida manifesta, about 4 percent have the meningocele form. The meninges (me-NIN-jez) consist of three layers of tough membranes that cover and protect the brain and spinal cord. The brain and spinal cord are also bathed in a fluid called cerebrospinal fluid (CSF). A meningocele is a CSF-filled sac formed when the meninges balloon through the gap in the vertebrae. It looks like a large blister covered by a thin layer of skin. The sac can range in size from as small as a grape to as large as a grapefruit.
A meningocele is harmless if the sac contains only CSF. However, if nerves are caught in the sac, the affected baby can have problems controlling muscles and the bladder. Babies with this form of spina bifida usually have surgery during infancy to put the meninges back inside the vertebrae and to close the gap in the vertebrae.
Myelomeningocele:
When many people think of spina bifida, they think of the myelomeningocele form. Approximately 96 percent of babies born with spina bifida manifesta have myelomeningocele, and it is the most serious type of spina bifida. As in meningocele, the meninges bulge through the gap in the spine, but in myelomeningocele, part of the spinal cord bulges out as well. The sac may be covered with skin or the nerves may actually be exposed.
People with myelomeningocele have a variety of physical and mental problems, the severity of which depends on the location of the defect in the spine. A gap high on the spinal column creates more problems than a gap at the lower back. People often experience loss of movement and feeling (paralysis) below the abnormal vertebrac. The most severely impaired children cannot walk or control their bowel or bladder. Most babies born with myelomeningocele also have hydrocephalus, which means that they have too much fluid inside and surrounding their brain. If hydrocephalus is left untreated, the excess pressure in the skull can cause blindness and permanent brain damage.
Myelomeningocele requires surgery within 24 to 48 hours of birth. Surgeons must close the gap in the vertebrae to protect the spinal cord and prevent infection. They also must treat hydrocephalus, if it is present. They do this by placing a device called a shunt into the brain to drain excess fluid and relieve pressure on the brain.
What Causes Spina Bifida?
Spina bifida sometimes runs in families, which suggests that genes may play a role in some cases. In 90 to 95 percent of cases, however, babies are born to families that have never before had a child with the condition. Mothers who have diabetes, a high fever during pregnancy, or who have taken a drug called valproic acid to treat epilepsy* seem to have a greater chance of having a baby with spina bifida than other mothers. In addition, scientists have linked a deficiency of folic acid (a B vitamin) in the mother's diet to a higher risk of having a baby with spina bifida. Adding folic acid to the diet significantly reduces the chance that a woman will give birth to a baby with spina bifida.
Living with Spina Bifida
Most children with spina bifida occulta, and many with meningocele, live normal lives without any impairment. Children born with myelomeningocele, however, often have multiple problems resulting from damage to their spinal cord. Surgery to repair the gap in the vertebrae and to place a shunt in the brain can prevent further damage to the nervous system. It cannot, however, reverse the nerve problems that are already present at birth.
The severity of symptoms caused by myelomeningocele varies from child to child. A common problem is the inability to control the bowel and bladder. Catheters, diapers, and attentive caregivers can all play a role in helping to control this problem and/or in alleviating associated embarrassment.
Many affected children cannot walk without crutches or leg braces, and many need a wheelchair. In addition, some children have learning difficulties, particularly with reading and math. Special education classes can help them in their academic work.
Children with spina bifida often develop sensitivity or an allergy to latex (natural rubber), which is used in such healthcare products as gloves and catheter tubes. The allergy probably develops because they come into contact with latex so often and at such a young age as a result of their medical care.
Even with the disabilities caused by spina bifida, children who have the condition often live well into adulthood. With the help of early and continuing medical, psychological, and educational treatment, children with spina bifida can lead full and productive lives.
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