What is Spina Bifida?
Spina bifida occurs when the spinal bones fail to close properly during early formation. Spina bifida occurs less often than Down syndrome, or in about 1 in 1,000 births. It is, however, the most common of the physically disabling congenital abnormalities. A parent who has one child with spina bifida has a greater chance (1 out of a 100) of having another. This increased frequency appears to be due to some combined effect of heredity and environment. There are now tests available to screen for spina bifida early in pregnancy.
A newborn with spina bifida appears at first glance to be normal, except for a small sac protruding from the spine. However, the sac contains spinal fluid and damaged nerves that lead to the lower body. Within the first few days, surgery must be performed to remove the sac and close the opening in the spine. Unfortunately, little can be done to repair the damaged nerves.
Most babies with spina bifida develop further problems later on, including the following.
Up to nine out of ten children with spina bifida eventually develop hydrocephalus, caused by an excessive increase in the fluid that normally cushions the brain from injury. The increase occurs because the spina bifida abnormality blocks the path through which the fluid ordinarily flows. This condition is serious and, if not treated, may lead to death.
The pediatrician should suspect hydrocephalus if the baby’s head is growing more rapidly than expected. The condition is confirmed by a computerized X-ray of the head, called a CT (computed tomography) scan or magnetic resonance imagery (MRI). If the condition exists, surgery will be necessary to relieve the fluid buildup.
People with spina bifida have an increased risk of developing an allergy to latex. You can reduce the chances that he will acquire the sensitivity by avoiding exposure to latex. But be aware that many infant products contain latex (bottle nipples, pacifiers, teething toys, changing pads, mattress covers, and some diapers) so they should be avoided.
Muscle weakness or paralysis.
Because the nerves leading to the lower part of the body are damaged, the muscles in the legs may be very weak or even paralyzed in children with spina bifida. Their joints also tend to be very stiff, and many babies with this disorder are born with abnormalities of the hips, knees, and feet. Surgery can be performed to correct some of these problems, and the muscle weakness can be treated with physical therapy and special equipment, such as braces and walkers. Many children with spina bifida eventually can stand and some do walk, though the learning process is often long and extremely frustrating.
Bowel and bladder problems.
Often the nerves that control bowel and bladder function are damaged in children with spina bifida. As a result, these children are more likely to develop urinary tract infections and damage to the kidneys due to abnormal urine flow. Special techniques are available to develop urinary control and minimize infections. Your pediatrician will advise you.
Bowel control also is a problem, but usually children with this disorder can achieve it. It may, however, take a great deal of time, patience, careful dietary management (to keep the stools soft), and the occasional use of suppositories, bowel stimulants, or special enemas.
Parents of children who have spina bifida and hydrocephalus or urinary tract problems must be ever alert for signs of infection. Fortunately, the types of infections that occur in these cases usually can be treated effectively with antibiotics.
Educational and social problems.
Seven out of ten children with spina bifida have developmental and learning disabilities requiring some sort of special education. Many also need psychological counseling and tremendous emotional support in order to deal with their medical, educational, and social problems.
Parents of a child with spina bifida need more than one physician to manage their child’s medical care. In addition to the basic care your pediatrician delivers, this disorder requires a team approach that involves neurosurgeons, orthopedic surgeons, urologists, rehabilitation experts, physical therapists, psychologists, and social workers. Many medical centers run special spina bifida clinics, which offer the services of all these health professionals in one location. Having all members of the team together makes it ea
sier for everyone to communicate and usually provides better access to information and assistance when parents need it.