National Dissemination Center for Children with Disabilities (NICHCY)
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
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.
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
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.
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
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.
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.
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
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).
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
Lutkenhoff, M. (Ed.). (1999). Children with spina bifida: A parents'
guide. Bethesda, MD: Woodbine. (Telephone: 800.843.7323. Web: www.woodbinehouse.com)
M., & Oppenheimer, S. (1997). SPINAbilities: A young persons
guide to spina bifida. Bethesda, MD: Woodbine. (See contact information
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
A. (1997). Living with spina bifida: A guide for families and professionals.
Chapel Hill, NC: University of North Carolina Press. (Telephone:
Bifida Association of America. (n.d.). Facts about spina bifida.
Washington, DC: Author. (See address below. Also available online
230 West Monroe Street, Suite 1800
Chicago, IL 60606
312.726.6200; 312.726.4258 (TTY); 800.221.6827 (Toll Free)
of Dimes Birth Defects Foundation
1275 Mamaroneck Avenue
White Plains, NY 10605
Rehabilitation Information Center (NARIC)
4200 Forbes Boulevard, Suite 202
Lanham, MD 20706
301.459.5900; 301.459.5984 (TTY); 800.346.2742 (Toll Free)
Bifida Association of America
4590 MacArthur Boulevard, N.W., Suite 250
Washington, DC 20007
202.944.3285; 800.621.3141 (Toll Free)
P.O. Box 1492
Washington, DC 20013
(800) 695-0285 · v/tty
(202) 884-8441 · fax
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