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Spina Bifida Information


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Spina Bifida

"Spina bifida is a neural tube defect
that occurs in 1 out of every 1,000 newborns
in the United States. In Canada,
one in every 750 babies is born with spina bifida.
Some 1,500 babies are born with this
condition each year.
That is one in every 2,000 live births.
Spina bifida occurs within the first
four weeks of pregnancy, before many woman
are aware that they are pregnant.
In addition to genetic and environmental
associations, it is felt that
folate deficiency may be an underlying
factor in its development.

For unknown reasons,
the embryo's neural tube (which develops
into the brain, spinal cord,
and vertebral column) fails to form properly
This means an open spinal column,
that is incompletely formed and is
exposed to the air, not covered by skin.
This results in varying degrees of
permanent damage to the spinal cord
and the nervous system."
Since the spinal cord does not form
and close properly,
other defects can happen in the nervous system.
These include the areas mentioned above;
hydrocephalus, syringohydromyelia and
Chiari malformations.
Possible problems happen with the bowel
and bladder function. Spine related roblems,
respiratory, and swallowing difficulties are
sometimes results of these defects
in the nervous system. (reference)



High resolution ultrasound or elevation
of maternal alpha fetal protein levels
helps in making the diagnosis.
Sometimes it is not found until birth.
Children born with spina bifida
are treated both medically and surgically.
The back and spinal cord are surgically closed,
and treatment of the hydrocephalus if needed.
This operation is to prevent infection or trauma
to the exposed spinal cord. Hydrocephalus is
usually present in about 80-90% of children
with spina bifida.

These children will need to see many physicians
and therapists for follow up. Physical therapy and
early intervention are important. Treatment for
bowel or bladder problems as well as bracing
for the legs or spine are often necessary.
Multidisciplinary spina bifida clinics
have spinal bifida specialists.

Children with spina bifida commonly have a
Chiari Malformation, Type I or II. The Chiari
may or may not cause problems.
Some references state that all children
with spina bifida have some degree
of Type II malformation.

The type of symptoms that can occur with
Chiari malformations include repeated choking,
breathing stops, neck pains, and complaints
of weakness or funny feelings in the arms.



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In the United States, approximately 1,500 infants
are born with spina bifida each year.
According to the Spina Bifida Association,
"Spina bifida is the most frequently occurring
permanently disabling birth defect...
More children have spina bifida than have
muscular dystrophy, multiple sclerosis,
and cystic fibrosis combined."
(reference)


Spina Bifida Association of America
4590 MacArthur Blvd NW #250;
Washington DC, 20007-4226;
Telephone: 800-621-3141; 202-944-3285;
Fax: 202-944-3295
E-mail: spinabifda@aol.com

Spina Bifida Association of Canada
220-388 Donald Street;
Winnipeg MB CAN R3B 2J4;
Telephone: 1-800-565-9488; 204-957-1784;
Fax: 204-957-1794

Association for Spina Bifida and Hydrocephalus
This web site in England gives information
about spina bifida, hydrocephalus
and related subjects. Also links to other
specialist organizations and web sites.


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