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From Another Perspective

By Staff | Apr 21, 2009

Let’s take a bit of a different direction in these articles by describing the disability first, then the medical approaches that are currently being used to help people who are dealing with that disability in any number of ways, followed by the suggested physical therapies that may be doing the best to at least help the person to cope better and more easily with that disability. Let’s start this approach by describing what the condition called spina bifida is really all about. We also need to say thank you and recognize the efforts of Dr. Michael A. Alexander, who does most of his work in the Nemours Foundation.

To begin with, spina bifida is a birth defect that involves the incomplete development of the spinal cord or its coverings. The term spina bifida comes from Latin and literally means “split? or open? spine.” Spina bifida occurs at the end of the first month of pregnancy when the two sides of the embryo spine fail to join together, leaving an open area. In some cases, the spinal cord or other membranes may push through this opening in the back. This condition is usually detected before the baby is born and treated right away.

The causes of spina bifida are largely unknown. Some evidence suggests that genes may play a role, but in most cases there is no familial connection. A high fever during pregnancy may increase a woman’s chances of having a baby with spina bifida and women with epilepsy who have taken the drug Valproic Acid to control seizures may have an increased risk of having a baby with spina bifida.

There are two forms of spina bifida: spina occulta and spina bifida manifesta. Spina bifida occulta is the mildest form of spina bifida (occulta means hidden) and most children with this type of disabling defect never have any health problems. Their spinal cords are usually unaffected, as well.

Spina bifida manifesta includes two types of spina bifida; meningocele and mylomeningocele. Mylomeningocele is by far the most serious of the spina bifida complex. and most babies who are born with this spina bifida condition also have hydrocephalus, an accumulation of fluid in and around the brain.

Because of the abnormal development of and damage to the spinal cord, a child with mylomeningocele typically has various forms of paralysis, as well. The degree of paralysis largely depends on where the opening occurs in the spine. The higher the opening on the back, the more severe the paralysis tends to be.

Children with various forms of spina bifida often have problems with bowel and bladder control, too. Some may also have attention deficit hyperactivity disorder (ADHD) or other learning disabilities such as eye-hand coordination problems.

Parents of children with spina bifida usually receive help from a medical team that may include several doctors (such as neurosurgeons, urologists, orthopedic surgeons, rehabilitation specialists, and general pediatricians). A nurse practitioner, physical and occupational therapists, and a social would round out the team.

The overall goal of the team is to create a lifestyle for the child and their family in which the disability interferes as little as possible with normal everyday activities. It may not be easy but it can be done.

We would like to thank Dr. Michael A. Alexander. of the Nemours Foundation for his invaluable experience in describing spina bifida for our readers. We owe him a lot, not just for the ways that spina bifida can occur, but also for his work in improving the quality of life for both the spina bifida patient and their family members.

Paul Rendine can be reached with questions or comments at prendine@1stallied.