What is Anencephaly?
Anencephaly is a defect in the closure of the neural tube during fetal
development. The neural tube is a narrow channel that folds and closes between
the 3rd and 4th weeks of pregnancy to form the brain and spinal cord of the
embryo. Anencephaly occurs when the "cephalic" or head end of the neural tube
fails to close, resulting in the absence of a major portion of the brain, skull,
and scalp. Infants with this disorder are born without a forebrain (the front
part of the brain) and a cerebrum (the thinking and coordinating part of the
brain). The remaining brain tissue is often exposed--not covered by bone or
skin. A baby born with anencephaly is usually blind, deaf, unconscious, and
unable to feel pain. Although some individuals with anencephaly may be born with
a rudimentary brain stem, the lack of a functioning cerebrum permanently rules
out the possibility of ever gaining consciousness. Reflex actions such as
breathing and responses to sound or touch may occur. The cause of anencephaly is
unknown. Although it is thought that a mother's diet and vitamin intake may play
a role, scientists believe that many other factors are also involved.
Recent studies have shown that the addition of folic acid (vitamin B9) to the
diet of women of childbearing age may significantly reduce the incidence of
neural tube defects. Therefore it is recommended that all women of childbearing
age consume 0.4 mg of folic acid daily.
Is there any treatment?
There is no cure or standard treatment for anencephaly. Treatment is
supportive.
What is the prognosis?
The prognosis for babies born with anencephaly is extremely poor. If the
infant is not stillborn, then he or she will usually die within a few hours or
days after birth.
What research is being done?
Research supported by the NINDS includes studies to understand how the brain
and nervous system normally develop. These studies contribute to a greater
understanding of neural tube disorders, such as anencephaly, and open promising
new avenues to treat and prevent neurological birth defects.
Organizations
Anencephaly Support Foundation
20311 Sienna Pines Court
Spring, TX 77379
info@asfhelp.com
March of Dimes Foundation
1275 Mamaroneck Avenue
White Plains, NY 10605
askus@marchofdimes.com
www.marchofdimes.com
Tel: 914.428.7100 888.MODIMES (663.4637)
Fax: 914.428.8203
Birth Defect Research for Children, Inc.
800 Celebration Avenue, Suite 225
Celebration, FL 34747
betty@birthdefects.org
www.birthdefects.org
Tel: 407-566-8304
Fax: 407-566-8341
National Organization for Rare Disorders (NORD)
P.O. Box 1968
(55 Kenosia Avenue)
Danbury, CT 06813-1968
orphan@rarediseases.org
www.rarediseases.org
Tel: 203.744.0100 Voice Mail 800.999.NORD (6673)
Fax: 203.798.2291
Source: National Institutes of Health; National Institute of Neurological Disorders and Stroke
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This information is provided by the Cleveland Clinic and is not intended to replace the medical advice of your doctor or health care provider. Please consult your health care provider for advice about a specific medical condition. This document was last reviewed on: 3/9/2009...#6031
