Just as there is a broad range of outcomes along the autism spectrum, those with Spina Bifida can have effects ranging from mild to severe. Every child is affected differently, and it is impossible to predict a child’s outcome before or at birth. Today’s Spina Bifida is different from that of even a decade ago. New treatments, surgeries, and therapies offer children even greater hope for productive and full lives. People with Spina Bifida attain advanced education, careers, and families of their own. They are doctors, teachers, artists, athletes, and parents. Spina Bifida is only one part of their lives; it does not define them.
Spina Bifida occurs when the baby’s spine fails to close during the first months of pregnancy. The most common and also the most severe type of Spina Bifida, called myelomeningocele, occurs when the spinal nerves and their protective coverings protrude through the open part of the spine. (For information about the other types of Spina Bifida, please visit the www.spinabifidaassociation.org.)
The point along the spinal cord where the undeveloped area occurs is called the “level” of the Spina Bifida. The higher up the spinal column the level occurs, the greater the effect on normal nerve function. Some people with very low levels of Spina Bifida can walk with little or no assistance, whereas those with higher levels will require leg braces and possibly crutches, walkers, or wheelchairs to get around.
In those with Spina Bifida, the brain is usually positioned further down into the upper spinal column than it should be. This change in position is part of a condition called the Chiari malformation. The brain tissue displaced into the upper spinal canal blocks the normal flow of cerebrospinal fluid. This leads to a build-up of fluid within the ventricles of the brain, a condition called hydrocephalus. In 80 to 90 percent of Spina Bifida cases, the hydrocephalus can only be treated by the insertion of a drainage tube called a shunt. The majority of people with Spina Bifida have average to above average intelligence. Many do have specific learning challenges that informed parents and educators can help the child to overcome.
Bowel and bladder function are controlled by nerves from the lowest levels of the spinal column. Most people with Spina Bifida have some challenges controlling their bowel and bladder function, but with intermittent catheterization and/or bowel management programs, nearly all achieve continence.
Credit for this wonderful explanation goes to Colleen who posted it on the Babycenter SB Kids page.