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and now?

how to make the most of life with your baby


"You matter to the last moment of your life,
and we will do all we can not only to help you die peacefully,
but also to live until you die."

Dame Cicely Saunders, founder of the modern hospice movement



You're expecting a baby with anencephaly and receiving this diagnosis was probably a great shock. How to go on after such news?
The sudden diagnosis can make you feel that all is lost. But as the shock wears off, your perspective can change.

Your baby is alive.

You are still his parents and can protect your baby, welcome her/him, love her/him for as long as s/he is with you.

Step by step. Day by day.

In the following articles, we've tried to put together some suggestions and experiences to help you live this special time ahead of you.


Life during pregnancy, birth and after. Or how to prepare your baby's birth.

About the importance of bonding with your baby

Siblings, or how to help your other children coping

Birth or Parenting Plans

   Sample Advance Directive Birth Plan

   Gracie Lynn's parenting plan

   Jenna Grace's parenting plan

   Charlotte's parenting plan Charlotte's parents had already lost another baby to anencephaly before.

Hats for your baby

   Knitting Pattern for a hat that fits for babies with anencephaly

   Crochet Pattern for hats that fit for babies with anencephaly

Memories and keepsakes

   Advice for taking pictures

   Creating memories and keepsakes of your precious baby


Don't waste your baby's life


"The story of life is quicker than the wink of an eye,
the story of love is hello and goodbye,
until we meet again."

Jimi Hendrix



Last updated February 14, 2024