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Anencephaly
Overview
Anencephaly is a birth defect that occurs before the 26th day of pregnancy.
It is a condition in which the embryo develops without the upper portion
of its skull. These embryos sometimes continue to develop into the fetal stage
and may even survive to be born alive, but with upper cranium and scalp missing
and the brain open to the outer world. The condition is always fatal, however
these babies may survive outside the womb anywhere between minutes and weeks.
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. The neural tube is a narrow sheath that folds and closes
between the 3rd and
4th weeks of pregnancy to form the brain and spinal cord of the embryo.
Causes
There is evidence that some cases involve genetics, some environmental factors,
but others are clearly impossible to define at this time. Anencephaly has
been related to low levels of folic acid, obesity, hypervitaminosis A (a
condition caused by taking too much vitamin A) and having previous infants with
neural tube defects. Although it is believed that the mother's diet and
vitamin intake may play a role, scientists believe that many other factors are
also involved. For now the cause of anencephaly is classified as
'unknown'.
Anencephaly is usually diagnosed with an AFP (alpha-fetoprotein) test at 16 to
18 wks and then confirmed by follow up level 2 ultrasound. In the United
States, anencephaly occurs in approximately 1 in 1000 live births.
Characteristics
In anencephaly, the infant is born with no cerebral hemispheres, only a
rudimentary brain and brainstem, and no calverium (skull bone). Often
there are associated malformations such as cleft lip and palate, abnormalities
of hands and feet and other internal malformations. I can be associated
with bulging, frog-like, eyes, and heart defects.
Diagnostic terms
Some other terms or diagnoses for anencephaly include:
-
aprosencephaly with open cranium
-
neural tube defect (NTD)
-
congenital CNS (central Nervous System) abnormality
-
congenital defective development of the brain
Treatment
There is no cure or standard treatment for anencephaly. Treatment is to offer
support and "comfort care" to the infant.. The outlook for infants
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. A rare few have
lived for several months.
Ethical Issues
Organ donation has caused an ethical debate when it comes to infants with
anencephaly due to the difficulty in determining brain death since these infants
usually have a rudimentary brain stem. For this reason, anencephalic
babies, like any other person, cannot have organs removed until actual brain
death has been diagnosed, even though some parents have expressed their wish
that their child's tissues and/or organs be used in life-saving treatment for
other children.
Other Information Resources
-
Anencephaly Net
http://www.anencephaly.net -
Anencephaly Support Foundation
http://www.asfhelp.com/ -
National Institute of Neurological Disorders and Stroke -- Anencephaly Information Page
http://www.ninds.nih.gov/health_and_medical/disorders/anencephaly_doc.htm
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This page last updated: Sunday, November 25, 2007