Anencephalus (also called Anencephaly)
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. Our program has been tracking anencephalus among live births in select counties since 2005 and are gradually expanding statewide.
- Using data from births to Hennepin and Ramsey county residents between 2009-2013, we found that 1.3 babies were born with anencephalus per 10,000 births.
- Using this data, we estimate about 9 babies are born with anencephalus every year in Minnesota.
Parental education and support are essential, and local, regional and national organizations may be very helpful.
Condition specific organizations
- Centers for Disease Control and Prevention
- National Institute of Neurological Disorders and Stroke (NINDS): Anencephaly Information Page
- Anencephaly Information
- The Compassionate Friends. Support for parents whose child has died
- Missing Grace Foundation
- National Organization for Rare Disorders