Stories of the lives of infants with anencephaly
"Hope is not the expectation that things will turn out well,
but the conviction that something is worth working for,
however it turns out."
Vaclav Havel
As anencephaly 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.
Why carry a dying child? A mother's perspective
Don't waste your child's life
"In the beginning I couldn't imagine how we could possibly go through with this - how I could possibly put my family and my daughter through this. As I accepted it was something that we had to do, I said fine Lord, but I don't think I could ever face him - please take him home soon. As time continued to pass I said fine Lord, I will face my son, but please take him home soon. Now, as my time with him begins to draw to a close, with God's perfect timing - there is an anticipation in my heart to meet my little fighter. Even though the world would not call him perfect, I know he will beautiful to us, and I will be so proud of him."
Holly, mom to Timothy Frank
Twins
Find the list of stories sorted by the baby's birthday
The site does not necessarily agree with the personal beliefs / faith of the the families and the medical advice they got. However, we have chosen to allow the stories to read as written so that parents could feel safe in sharing their unique experiences of giving birth to their children with anencephaly.
I sometimes wonder when things will get back to "normal" again (I think what I'm really asking is
"When will this not hurt anymore?"), but I can't help but think this experience will redefine
"normal" for us. And, if normal means going back to being the person I was, even two weeks ago,
and tossing out the beautiful lessons the Lord has shown me, then I don't want "normal."
Ryan and Laura, parents to Emily Jean
Don't waste your child's life
Jon and Jenni are the parents of Chase who had anencephaly. On their blog, Jon shares a few journal entries he wrote
during the pregnancy and after Chase's birth and death. Their wish is that others may be comforted with the comfort they received.
We are very grateful that they allowed us to publish their inspiring and helpful texts.
It's quite hard to find fathers expressing their feelings about their child with anencephaly. On the linkpage you can find several links to texts written by fathers
If you have carried a baby with anencephaly to term and want to share your story with us, e-mail us, we would be more than happy to add a page for your baby.
Stories of parents who carried their baby to term despite a poor prenatal diagnosis
Last updated August 2nd, 2023
