The handicaps of Spina Bifida

Although spina bifida is relatively common, until recently most children born with a myelomeningocele died shortly after birth. Now that surgery to drain spinal fluid and protect children against hydrocephalus can be performed in the first 48 hours of life, children with myelomeningocele are much more likely to live. Quite often, however, they must have a series of operations throughout their childhood. School programs should be flexible to accommodate these special needs.

What are the effects of Spina Bifida?

Effects of spina bifida can include:

1. Paralysis and loss of sensation
In the case of myelomeningocele the spinal cord protrudes from the spine throughout pregnancy and is closed by surgery shortly after birth. As a result the spinal cord is almost invariably damaged and defective, the nerves being disorganised and broken. As a result messages from the brain (controlling and initiating movement) and those from the body to the brain (giving the sensations of touch, pain and position) are impaired. However, paralysis, muscle weakness and loss of sensation occur only at the level of the lesion and downward. Due to lack of skin sensation and decreased mobility, skin tissue breakdown may occur resulting in pressure sores. In most cases the head, upper trunk and arms are not affected. The level of impairment varies considerably depending on the amount of damage and the location of the lesion.

2. Lack of bladder and bowel control (Incontinence)
The nerves that control the bladder and bowel are located in the lowest region of the spinal cord. Consequently incontinence is a major problem particularly in the case of myelomeningocele. Lack of bladder control presents two immediate dangers - infection and back pressure on the kidneys which, without proper management, can lead to renal problems.

3. Hydrocephalus
Hydrocephalus literally means 'water on the brain' and is a potentially dangerous condition involving the excessive accumulation of spinal fluid within the brain caused either by over production of the fluid or more usually by an obstruction to its normal circulation. While it is a complication of spina bifida occurring in approximately 90 % of cases, hydrocephalus is by no means exclusive to spina bifida.

Many children with myelomeningocele need training to learn to manage their bowel and bladder functions. Some require catheterization, or the insertion of a tube to permit passage of urine.

The courts have held that clean, intermittent catheterization is necessary to help the child benefit from and have access to special education and related services. A successful bladder management program can be incorporated into the regular school day. Many children learn to catheterize themselves at a very early age.

In some cases, children with spina bifida who also have a history of hydrocephalus experience learning problems. They may have difficulty with paying attention, expressing or understanding language, and grasping reading and math. Early intervention with children who experience learning problems can help considerably to prepare them for school.

Children with myelomeningocele need to learn mobility skills, and often require the aid of crutches, braces, or wheelchairs. It is important that all members of the school team and the parents understand the child's physical capabilities and limitations. Physical disabilities like spina bifida can have profound effects on a child's emotional and social development. To promote personal growth, families and teachers should encourage children, within the limits of safety and health, to be independent and to participate in activities with their nondisabled classmates.

© Donald Willemsen.