Spina Bifida means cleft spine, which is
an incomplete closure in the spinal column. In general, the three types of
spina bifida (from mild to severe) are:
1.
Spina Bifida Occulta: There is an opening in one or more of the vertebrae
(bones) of the spinal column without apparent damage to the spinal cord.
2. Meningocele: The meninges, or protective covering around the spinal cord,
has pushed out through the opening in the vertebrae in a sac called the
"meningocele." However, the spinal cord remains intact. This form
can be repaired with little or no damage to the nerve pathways.
3. Myelomeningocele: This is the most severe form of spina bifida, in which
a portion of the spinal cord itself protrudes through the back. In some
cases, sacs are covered with skin; in others, tissue and nerves are exposed.
Generally, people use the terms "spina bifida" and
"myelomeningocele" interchangeably.
©
copyright 2001 American Medical Association
INCIDENCE
Approximately 40% of all Americans may have
spina bifida occulta,
but because most experience little or no symptoms, very few of them ever know
that they have it. The other two types of spina bifida, meningocele and
myelomeningocele, are known collectively as "spina bifida manifesta,"
and occur in approximately one out of every thousand births. Of these
infants born with "spina bifida manifesta," about 4% have the
meningocele form, while about 96% have myelomeningocele form.
CHARACTERISTICS
The effects of myelomeningocele, the most serious form of spina bifida, may
include muscle weakness or paralysis below the area of the spine where the
incomplete closure (or cleft) occurs, loss of sensation below the cleft, and
loss of bowel and bladder control. In addition, fluid may build up and cause
an accumulation of fluid in the brain (a condition known as hydrocephalus).
A large percentage (70%-90%) of children born with myelomeningocele have
hydrocephalus. Hydrocephalus is controlled by a surgical procedure called
"shunting," which relieves the fluid buildup in the brain. If a
drain (shunt) is not implanted, the pressure buildup can cause brain damage,
seizures or blindness. Hydrocephalus may occur without spina bifida, but the
two conditions often occur together.
EDUCATIONAL IMPLICATIONS
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.
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. Many children learn to catheterize themselves at a very
early age.
A successful bladder management program can be incorporated into the regular
school day.
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.
Mainstreaming, or successful integration of a child with spina bifida into a
school attended by nondisabled young people, sometimes requires changes in
school equipment or the curriculum. Although student placement should be in
the least restrictive environment the day-to-day school pattern also should
be as "normal" as possible. In adapting the school setting for the
child with spina bifida, architectural factors should be considered. Section
504 of the Rehabilitation Act of 1973 requires that programs receiving
federal funds make their facilities accessible. This can occur through
structural changes (for example, adding elevators or ramps) or through
schedule or location changes (for example, offering a course on the ground
floor).
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 non-disabled
classmates.
Source: NICHCY
www.nichcy.org
