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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.


”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


Anouk Amanda Marie Anna Joy Ava Grace Camdyn Courtney Denise
Gabriel John Gracie Lynn Hope Marie Ira Isabel Eve Jaden Thien
James Jenna Grace Jerry Elijah Jesse Alexander Jonathan Joseph Jerome
Joyann Julie Kyle Benjamin Loren Joseph Lucas Adam Luke Daniel
Malachi Samuel Maryann Elizabeth McCoy Michael Andrew Michael David Pedro Jose
Robert William Rose Dale Sarah Timothy Paul Tyler Damon Zakary Evan
Sandra Maritza Austin John Noah Alexander Isaac Ayden Zion-Grace Grayson Abbott
Gianna Faith-Dawn Taylor Wayne Faith Elizabeth Ajani Josiah Kylie Marie Samuel David
Carmen Arviansyah Peter Eoin Anthony Zak Nathan Emmett
Vitoria de Cristo Shelley Gracelyn Hope Faith Elizabeth F. Konnor Scott Leila Anne
Stephanie Ann Gina Christie Khaylena Carleigh McKenna Macy Ann Noah Tobias
Ambra Storm Rachel Alice Juliana Lucille Kevin Christopher Theo Nathaniel Bethani Beryl
Joshua Melvin Kassidy Briana Madilynn Anahera Makenna Anastasia Joy Ethan Nicholas
Amalya Nathaniel Ryder William Presley Marie Abigail Leigh Kaitlin Mary Marvella Jean Love
Leo Oliver Joseph Shane Michael Nathan Wonderful Legacy Marley Jane
Lucy Sunflower Eira Rae Joy Kyra Emmanuel John Gilda Joann
Ethan David James Henry Jaycee Avery Ann Serenity Grace Charlotte Kathleen
Brigid Valentine Wendy Belle Joshua Philip Everly



Anna and Logan Anna and Tess David and Jonathan Faith and Sarah Matthew and Emily
Clara and Caleb Emily and Hayden Carys and Paxton Christopher and Harry Madeline and Molly
Matthew and Noah Oran and Jude Elizabeth and Lauren Albi and Bobby


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, just 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 November 20, 2018