Understanding Spina Bifida
Spina bifida ("open spine") is a birth condition characterized by an incomplete closure of the spine. Children born with spina bifida may have varying degrees of muscle paralysis, bladder and bowel problems, loss of skin sensation and spine and limb problems.
Spina bifida is not rare. It occurs in one of every 1,000 children born. However, with help from parents and a team of doctors, therapists, teachers and others, individuals with spina bifida can achieve independence and participate fully in their communities.
Although spina bifida occurs in different forms and has varying degrees of effect, most babies born with the condition will require surgeries to correct spinal, foot or leg problems; shunt surgery to drain fluid from the brain; application of techniques to control bladder and bowel function; and braces and other equipment to assist in walking. Nevertheless, advances in treatment and management have made it possible for children born with spina bifida to live long and productive lives.
There are three broad types of Spina bifida:
- Lipomeningocele: A lipoma or fatty tumor is covered by skin and located over the lumbosacral spine.
- Meningocele: The protective covering of the spinal cord is pushed out in a section of the spinal column.
- Myelomeningocele: The most common and most severe form, in which both the spinal cord and its coverings are out of position.
Most babies with spina bifida develop hydrocephalus, an accumulation of fluid in the brain. If fluid is not drained, the pressure buildup can cause brain damage, seizures or blindness.
Parents who have one child with spina bifida, or have spina bifida themselves, increase their chances of having a child with spina bifida.
Spina bifida has been linked to mothers who do not receive sufficient amounts of folic acid prior to pregnancy.
The Agent Orange Benefits Act affords benefits to Vietnam veterans' whose children have spina bifida. Benefits include health care, a monthly allowance and vocational training and rehabilitation services. These benefits are the result of a finding which associates veterans' exposure to dioxin with an increased incidence of spina bifida among their children.
As type and level of severity differ among people with spina bifida, each person with the condition faces different challenges and may require different treatments.
The best way to manage spina bifida is with a team approach. Members of the team may include neurosurgeons, urologists, orthopedists, physical and occupational therapists, orthotists, psychologists and medical social workers.
- Surgery to close the child's back. This is usually done within the first 24 hours of life.
- Insertion of a shunt to drain excess brain fluid is sometimes needed.
- Bracing and surgery to achieve standing and walking.
- Early and aggressive physical therapy to improve range of motion and promote normal motor development.
- Bowel and bladder management programs, sometimes including intermittent catheterization.
- Psychological counseling to monitor the child's mental status and emotional development, as well as the secondary symptoms of spina bifida such as emotional problems resulting from factors such as low self-esteem and lack of social skills training.
Early intervention is important for those children who have a history of hydrocephalus as they sometimes experience learning problems. These problems include difficulty paying attention, expressing or understanding language, organizing, sequencing and grasping reading and math. Early intervention is very useful in helping these children prepare for school.