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
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.
The story of life is quicker than the wink of an eye,
the story of love is hello and goodbye,
until we meet again.
Pamphlet about anencephaly download and distribute!
Frequently asked questions
What is a neural tube defect?
Prevention of anencephaly
Report about the birth and life of babies with anencephaly
Preparation of the birth of a baby with anencephaly
Don't waste your baby's life
Creating memories of your dying baby
Advice for taking pictures of deceased or dying babies
Resources for grandparents, family and friends affected by anencephaly or how to provide support to parents expecting a baby with anencephaly
Comfort for grieving parents
Links about anencephaly
Anencephaly Network for more exchange than the reading of personal stories
Books for grieving parents
Updates what's new here?
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. 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 webmaster.
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