Books and more by anencephaly.info
Books
The goal of anencephaly.info has always been to provide the information,
advice and support that families need when they receive an anencephaly
diagnosis for their baby. We have achieved this through our website,
support group and social media presence, and we are now excited to introduce a new approach:
A series of journals designed specifically for families with a baby affected by anencephaly.
These include a general guide, a pregnancy journal and a book for the baby's sibling
to help you navigate the coming months.
To make them easily available to families all over the world (and avoid having to deal with payments
and shipping ourselves), we have chosen to publish them on Amazon.
Life with Anencephaly
A guide for when you learn your baby has anencephaly, and their life is expected to be brief
You have received the heartbreaking news that your child has anencephaly.
Receiving this diagnosis is devastating. In a moment, your wishes, hopes,
and expectations for life with your child are destroyed and replaced with
questions and uncertainty. Nothing is as it was before.
This book is written by parents who have been in your position and want to
help you navigate this challenging time. You are not alone, and while no one
can take away the pain, we hope that by sharing our experiences, we can walk
alongside you in your grief and help provide a sense of comfort.
This book will guide you from the time of diagnosis through the remainder
of pregnancy and will help you prepare for the baby’s birth, life, and death.
Order "Life with Anencephaly"
If you see a warning that the book cannot be delivered to your address, consider switching to the Amazon platform for your country.
Preview (click on the picture to enlarge):
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My Pregnancy Journal
A pregnancy journal for expectant mothers whose baby's life is expected to be brief.
When a mother learns that the baby she is carrying has a birth defect and will
die shortly after birth, normal pregnancy journals are no longer helpful.
They contain pages the mom will never have a chance to fill in, or lack pages
that would help her to reflect on the value of each day of her baby's life.
My Pregnancy Journal is written by mothers whose babies had a very short life expectancy.
The content is specifically tailored to give mothers the opportunity to chronicle each
precious moment with her baby.
This journal is written for mothers who are expecting a baby with anencephaly,
but it can also be adapted for mothers of babies with other conditions associated with a short life expectancy.
Order "My Pregnancy Journal"
If you see a warning that the book cannot be delivered to your address, consider switching to the Amazon platform for your country.
Preview (click on the picture to enlarge:
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Our Baby and Me
A guide for siblings of a baby who will die shortly after birth due to anencephaly.
You have received the heartbreaking news that your baby has anencephaly.
Our Baby and Me is a tool that can help your older child
process and understand the complexities of this diagnosis.
This book tells the story of Max, whose baby sister had anencephaly.
Max shares how he and his family navigated their feelings and how he
remembers the special moments he had with his baby sister.
Pages are included for siblings to fill in, draw, write, or paste pictures.
This book is a space where they can express their feelings and create memories.
Order "Our Baby and Me"
If you see a warning that the book cannot be delivered to your address, consider switching to the Amazon platform for your country.
Preview (click on the picture to enlarge:
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Anencephaly pamphlets
For parents who have just received a diagnosis,
nothing is more important than getting the correct information
about their baby's condition as soon as possible.
This is why we created a pamphlet containing the most important facts about anencephaly,
along with links to useful resources. While we recognise that information alone cannot
alleviate the pain, we believe it can help parents make informed decisions and feel less overwhelmed.
Ideally, when parents receive an anencephaly diagnosis,
their doctor will be able to give them the pamphlet immediately.
But how can we get the word out to doctors? It's easier than you think:
Download the anencephaly pamphlet here and print some copies.
Take them to your next appointment or send them with a letter.
We were all grateful for any help or information we received when we needed it,
so here you can make a difference to another family's life.
Thank you very much for your help!
pamphlet in English
pamphlet in Spanish
pamphlet in German
pamphlet in French
pamphlet in Italian
pamphlet in Dutch
pamphlet in Danish
pamphlet in Portuguese
pamphlet in Russian / Информация
об анэнцефалии
pamphlet in Indonesian
pamphlet in Slovenian
pamphlet in Korean / 알림지
pamphlet in Arabic / عربي
Report about the birth and life of babies with anencephaly
Spontaneous pregnancy outcome after prenatal diagnosis of anencephaly,
You will need Adobe Acrobat Reader to open the files.
Last updated 27.02.2026
