Anencephaly is a congenital birth defect that occurs in approximately one in one thousand pregnancies. It is a neural
tube defect, just as is spina bifida. Life expectancy for a baby with anencephaly after birth is just a few hours,
sometimes a few days at most.
As the malformation is usually detected during a pre-natal scan, parents are confronted with a choice between life and death. A choice often made with very little information of what is in store for them. It is with this in mind that we have made the choice to share the stories of the brief, but wonderful lives of babies with anencephaly. We hope that it will be of help to you and impart courage.
"You are valuable because you exist.
Not because of what you do or what you have done
but simply because you are."
The advice given on this site is offered from non medically qualified individuals. This site is the result of research
and experience made by affected parents. The information provided on this site is designed to support, not replace,
the relationship that exists between a patient/site visitor and his/her existing physician. Confidentiality of data
relating to visitors is respected by this website. For further information or support, please write to the
The anencephalie-info site is financed by private donations; all work done on this site is on a voluntary basis.
There is no advertising on this site.
Contact information about the responsible of this site.
Last updated April 30, 2015