Anencephalus (also called Anencephaly)

Condition Description

Anencephalus (AN-en-SEF-ah-lus) is a severe neural tube birth defect that is almost always incompatible with an infant's survival. In the third and fourth week of fetal life the embryo's cells fail to fold over and close to form a channel that becomes the brain. This results in an absence of a major portion of the brain, skull, and scalp. Babies with Anencephalus are often stillborn. If the babies are born alive, they usually live just a few hours or days. They do not have a forebrain or cerebrum (the major "thinking" structure of the brain), and the remaining brain tissue is often not covered by bone or skin. The baby will be blind, deaf, unconscious and unable to feel pain. However, reflex actions such as breathing and responses to sound or touch may be present in some babies. The cause is unknown but is probably an interaction of genetic factors along with environmental risk factors (nutritional deficits and environmental toxins). Increasing the folic acid consumption of women of child-bearing age is expected to significantly reduce the incidence of neural tube defects, including Anencephalus. 

Using data from Minnesota births between 2014-2018, we found 30 babies were born with anencephaly, resulting in a rate of 0.9 babies per 10,000 births. Annually, about 6 babies are born with anencephaly. 

Parental education and support are essential. Local, regional, and national organizations may be very helpful.

Condition specific organizations

• Centers for Disease Control and Prevention
• The Compassionate Friends. Support for parents whose child has died
• Missing Grace Foundation
• National Organization for Rare Disorders