Definition
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:
- 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.
- 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.
- 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.
Incidence
Approximately 40% of all Americans may have spina bifida occulta, but
because they 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. 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.
Successful integration of a child with spina bifida into school sometimes
requires changes in school equipment or the curriculum. 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 nondisabled
classmates.
Resources
Lutkenhoff, M. (Ed.). (1999). Children with spina bifida: A parents'
guide. Bethesda, MD: Woodbine. (Telephone: 800.843.7323. Web: www.woodbinehouse.com)
Lutkenhoff, M., & Oppenheimer, S. (1997). SPINAbilities: A young
person's guide to spina bifida. Bethesda, MD: Woodbine. (See contact
information above.)
National Institute of Neurological Disorders and Stroke (NINDS). (2001).
NINDS spina bifida information page. Available online at: www.ninds.nih.gov/health_and_medical/disorders/spina_bifida.htm
Sandler, A. (1997). Living with spina bifida: A guide for families and
professionals. Chapel Hill, NC: University of North Carolina Press.
(Telephone: 800.848.6224. Web: http://uncpress.unc.edu)
Spina Bifida Association of America. (n.d.). Facts about spina bifida.
Washington, DC: Author. (See address below. Also available online at: www.sbaa.org/html/sbaa_facts.html)
Organizations
Easter Seals--National Office
230 West Monroe Street, Suite 1800
Chicago, IL 60606
312.726.6200; 312.726.4258 (TTY); 800.221.6827 (Toll Free)
Email: info@easter-seals.org
Web: www.easter-seals.org
March of Dimes Birth Defects Foundation
1275 Mamaroneck Avenue
White Plains, NY 10605
914.428.7100; 888.663.4637
Email: askus@marchofdimes.com
Web: www.marchofdimes.com
National Rehabilitation Information Center (NARIC)
4200 Forbes Boulevard, Suite 202
Lanham, MD 20706
301.459.5900; 301.459.5984 (TTY); 800.346.2742 (Toll Free)
Email: naricinfo@heitechservices.com
Web: www.naric.com
Spina Bifida Association of America
4590 MacArthur Boulevard, N.W., Suite 250
Washington, DC 20007
202.944.3285; 800.621.3141 (Toll Free)
Email: sbaa@sbaa.org
Web: www.sbaa.org
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