Helpful books and articles for families affected by anencephaly:
Guides about carrying to term
Personal stories about carrying to term
About Grief
Children's books
Guides about carrying to term
A Gift of Time
Continuing Your Pregnancy When Your Baby's Life Is Expected to Be Brief
by Amy Kuebelbeck and Deborah L. Davis
The John Hopkins University Press, Baltimore 2011
ISBN-13: 978-0-8018-9762-7
A Gift of Time is a gentle and practical guide for parents who are (or are considering)
continuing their pregnancy knowing that their baby's life will be brief. When prenatal
testing reveals that an unborn child is expected to die before or shortly after birth,
some parents will choose to proceed with the pregnancy and to welcome their child into
the world. With compassion and support, A Gift of Time walks them step-by-step through
this challenging and emotional experience – from the infant's life-limiting prenatal
diagnosis and the decision to have the baby to coping with the pregnancy and making
plans for the baby's birth and death.
Based on material from more than 100 parents from across the U.S., Canada, Europe, and
Australia, A Gift of Time draws extensively from parent experiences and includes many
direct quotes that tell powerful stories of their own. Full of practical suggestions for
parents and for caregivers, it also features the innovative concept of perinatal
hospice/palliative care. Caring and thoughtful, the book helps parents embrace the
extraordinary time they will have with their child.
Carrying to Term
A Guide for Parents After a Devastating Prenatal Diagnosis
by Jane Lebak
ISBN-13: 978-1942133247
Available on amazon
Every year, thousands of expecting parents start prenatal testing to find
out if it's a boy or a girl…and instead learn the baby is going to die.
Anencephaly. Trisomy 18. Potter's sequence. They're called "incompatible with life."
But they're not incompatible with love. Many doctors recommend immediate termination,
but more parents are carrying their babies for as long as possible, often without
guidance. Carrying to Term: A Guide for Parents after a Devastating Prenatal Diagnosis
addresses every aspect of the longest (and shortest) months of your life. From emotional
issues to spiritual struggles to funeral-dress shopping while you're still seven months
pregnant, Carrying to Term offers strategies for parents struggling just to make it
through the day. You can forge a best-case scenario out of a worst-case scenario.
You can bond with a baby who hasn't yet been born. Parents have learned to make
memories in brief windows of time, and you can too. Author Jane Lebak carried to
term with Emily Rose, diagnosed with anencephaly at 22 weeks, and has been active
in the infant loss community ever since.
My Child, My Gift
A Positive Response to Serious Prenatal Diagnosis
A Great book for parents who got a serious prenatal diagnosis. It's a well-researched yet easily understandable,
positive guide when you need to make sense out of what seems to be senseless.
This book is a comprehensive guide for parents who are unfortunately given the "bad news" regarding their pre-born child with either an
ultrasound or laboratory diagnosis of a potential or real congenital problem. It explains to them both secular and religious faith-based
strategies on how to emotionally, psychologically, and spiritually prepare for and assimilate the multiple and various emotions they will
have to reconcile, as well as how to deal with the mixed messages they will be receiving from family members, friends, physicians, and
their own inner conflicting feelings.
Madeline utilizes both her personal experience and multitudes of interviews conducted with parents given severe prenatal diagnoses.
The complete text of the book is available on the website mychildmygift.com.
Personal stories
Buried Dreams
From Devastating Loss to Unimaginable Hope
by Lindsey R. Dennis
Abingdon Press (September 18, 2018)
At 20 weeks pregnant, Lindsey Dennis and her husband were told
the child she was carrying would not live due to anencephaly.
Later, in another stunning blow, they were told the almost the same news
with her second pregnancy (acrania) . They chose to celebrate both
lives alongside a community, both local and online, as she carried
each child to term only to bury them 14 months apart from each other.
Through the crushing of their hopes and dreams, they came to know
the kind of resurrection hope that can rise from the grave. This
experience of infant loss revealed to Dennis how sorrow and suffering
are instruments in the hands of God to forge in us a greater joy and
hope than one can ever know. This kind of joy can only be discovered
when we walk through the deep pain of burying our most precious dreams.
Maranomi
The story of Paxton Cole and Carys Rainn
by Keri and Aaron Kitchen
ISBN-13: 978-1496040404
Available on amazon
The term, maranomi, is taken from the Biblical account of Ruth and Naomi and means
bittersweet. It is used as a label for parents who have lost a child or children,
just as orphan is a term used to label children who have lost their parents. The book,
Maranomi: The story of Paxton Cole and Carys Rainn is a true story about exploring
faith in God and finding peace and joy in the midst of pain and sorrow after one twin
is diagnosed with anencephaly, a fatal birth defect at 16 weeks gestation.
What makes this book really precious, is that Keri (the mom) and Aaron (the dad) are
both writing about the same situations from their own point of view.
A LIFE Everlasting
The extraordinary story of one boy's gift to medical science
by Sarah Gray
HarperOne; 1st edition (September 27, 2016)
Sarah Gray is expecting identical twins, Thomas and Callum. When Sarah Gray
received the devastating news that her unborn son Thomas was diagnosed with
anencephaly, a terminal condition, she decided she wanted his death—and life—to
have meaning. In the weeks before she gave birth to her twin sons in 2010,
she arranged to donate Thomas's organs. Due to his low birth weight, they would
go to research rather than transplant. As transplant donors have the opportunity
to meet recipients, Sarah wanted to know how Thomas's donation would be used.
That curiosity fueled a scientific odyssey that leads Sarah to some of the most
prestigious scientific facilities in the country, including Harvard, Duke, and
the University of Pennsylvania. Pulling back the curtain of protocol and
confidentiality, she introduces the researchers who received Thomas's donations,
held his liver in their hands, studied his cells under the microscope.
Genuine Faith and the Test of Love
Paul R. Etterling
Xulon Press, 2007
ISBN 978-1-60034-883-9
"Genuine Faith" tells us the story of a father, who one day got the devastating news
that his unborn son had anencephaly – an always fatal birth defect – and
would die at or shortly after his birth. The book tells how Paul and Frances Etterling
had to weigh the doctors' pressure to abort ("why go through the pain of pregnancy and
delivery to profit nothing?") against their beliefs, until the death of David Nathaniel,
a "Well loved gift of God".
This book is more than just the story of their quest for the right decision.
It is the journey of a seeker of truth who describes how, in times of decision, he
found help about life or death in the Bible, the living word of the Holy and Eternal God.
It is a teaching of a pastor which will help all of us, in trouble or not, to learn
how to build our life on faith as solid as a rock that will resist the biggest tests.
"Genuine Faith and the Test of Love" does not contain all the perfect answers, recipes
or advice about what to do. But through the different chapters the reader is guided and
helped to search for an answer in the unique source of truth: the Bible. Rather than
presenting human wisdom, Pastor Etterling points out the path to the One who made heaven
and earth and every life on it.
"Genuine Faith" is the book I have been awaiting for years; it speaks to my heart. I
heartily recommend it to every parent who receives a poor prenatal diagnosis for his baby.
Reading it will bring a lamp to your darkness.
"Genuine Faith" will be a source of inspiration for all those searching for guidance in a
difficult situation. It will help the reader to stop looking at the circumstances but rather
to on the Lord of the circumstances.
Dear Louise
By Penelope Sutherland
Publication Date: June 22, 2015 on Amazon Digital Services LLC
Available on amazon
Dear Louise is a memoir of one woman's pregnancy and subsequent loss of a baby daughter with anencephaly, with the
events occurring in 1983 and 1984. Written close to two decades later this book laid dormant for another fifteen
years before finally making it to print. Dear Louise is an account of love, devastation, catharsis and hope.
Penelope Sutherland knew to find the words to express her feelings, her world, her journey and let the reader imagine
what it was to be a mother 30 years ago in the UK, what it meant to lose a baby back then.
Chiara Corbella Petrillo
A Witness To Joy
By Simone Troisi and Cristiana Paccini
Sophia Institute Press
ISBN-10: 1622823052
Chiara and Enrico have a deep faith in God. Their couple will soon be challenged in many ways though.
Their first child Maria will be diagnosed with anencephaly. A year later, their second baby, Davide, has
multiple birth defects on his kidneys, bladder and legs. They carry both to term, and have to say good-bye soon after birth.
Yet God was preparing their hearts for more more sorrow and more grace.
While pregnant a third time, Chiara developed a malignant tumor, but refused the treatment
that would save her but risked the life of her unborn son. Almost immediately after giving birth to
Francesco, Chiara's tumor became terminal. Her body was tested, and so was her soul as she suffered through terrible
dark nights. She said yes to everything God sent her way.
And as her days on earth came to an end, Enrico looked down on his wife and said, "If she is going to be with Someone
who loves her more than I, why should I be upset?" Chiara was to be a witness to joy in the face of great adversity,
the kind which makes love overflow despite the sorrow from loss and death.
Eight hours of eternity
Giacomo's story
By Silvia Fasana
Itaca Editioni 2021
ISBN/id: 9788852606656
What can you find in a mother's heart and mind when she has been told that the
baby in her womb has anencephaly? Through the pages of her diary, Silvia lets us
live those dramatic hours and the many "whys" she and her husband had. This is
the beginning of a journey supported by many people and the reading of some
important books, that helped a family avoid being overwhelmed by despair and
recognise that their son, like all children, was only asking to be welcomed,
loved and accompanied to the destiny of his short but meaningful life.
This is the miracle that happened: Giacomo lived only eight hours, but he left
a sign in the life of many people. He let questions be made, he comforted, he gave
hope and certainty to everybody that every life has value. Always.
Silvia is a midwife and birth doula and offers her services here
Waiting with Gabriel
A Story of Cherishing a Baby's Brief Life
By Amy Kuebelbeck
Loyola Press, Chicago 2003
ISBN 0-8294-1603-X
Gabriel Kuebelbeck Neuzil lived nine months inside his mother with only half a heart.
He lived but two and a half hours once he was born. In that time, a whole community
gathered to celebrate, love, and honor him.
Gabriel's mother, Amy Kuebelbeck, shares the story of her family's heartbreaking loss as
well as the tragedy of all babies born with hypoplastic left heart syndrome. After meeting
with parents, counselors, medical professionals, and their parish priest, Kuebelbeck and her
husband, Mark Neuzil, faced the ultimate conundrum: What happens when keeping your baby alive
and sparing him unnecessary pain are mutually exclusive?
With courage and clarity, Kuebelbeck and her family chose to offer Gabriel the best possible
life in the short time he would be with them. Gabriel died peacefully in his mother's arms,
surrounded by people who loved him.
I Will Carry You
The Sacred Dance of Grief and Joy
By Angie Smith
B&H Publishing Group, Nashville TN, 2010
ISBN: 978-0-8054-6428-3
In 2008, Angie Smith and her husband Todd (lead singer of the group Selah) learned through ultrasound
that their fourth daughter had conditions making her "incompatible with life" (trisomy 18). Advised to terminate
the pregnancy, the Smiths chose instead to carry this child and allow room for a miracle. That miracle
came the day they met Audrey Caroline and got the chance to love her for the precious two-and-a-half hours she lived.
Sufficient Grace
Standing in the sacred place where heaven meets earth
By Kelly Gerken
Sufficient Grace Ministries, 2019
ISBN-10 : 1092605924
Kelly shares the story of the loss of three of her children; her daughters who died of
Twin-to-twin transfusion syndrome and a son who had Potter's Syndrome, and how she was lead
to found Sufficient Grace Ministries, serving grieving families.
Misty
Our Momentary Child
By Carole Gift Page
Fleming H. Revell / Baker Book House Company, Grand Rapids/USA
In this touching journal, a grieving mother recounts the loss of her baby and the feelings
of loss, sorrow and hope as she chronicles the birth and death of her child. "Misty"
offers encouragement to those mourning a love one's death as well as understanding to
those who stand by the grieving. Carol Gift Page's daughter Misty had trisomy 18.
The Shaming of the Strong
The Challenge of an Unborn Life
By Sarah Williams
Kingsway Publications (7 Oct 2005)
ISBN-13: 978-1842911792
This extraordinary story begins with the happy news of a new member of the Williams
family. Sarah's two young daughters are excited, as is her own mother, Jennifer Rees
Larcombe. But the happiness is shortlived, as the scan at the hospital reveals that
the baby has thanatophoric dysplasia, a condition which will mean severe skeletal
deformity. Birth will be fatal.
Sarah and husband Paul decide to go to full term and not abort, which shocks the staff
at the hospital. So their personal anguish is exacerbated by the fight to maintain the
baby's own dignity as a human being. Naming her is important – and they decide
on Cerian, which is Welsh for 'loved one'. The book allows us to experience the emotions
of Sarah and her family on the difficult journey towards Cerian's birthday, which will
also be her deathday.
Defiant Birth
Women who resist medical eugenics
Melinda Tankard Reist
Spinifex Press, North Melbourne, 2006
ISBN 1 876756 59 4
Defiant birth tells the courageous stories of women who continued their pregnancies
despites intense pressure from doctors, family members and social expectations. These
women were told they shouldn't have their babies because of a perceived imperfection
in the child, or because their own disabilities do not fit within the parameters of
what a mother should be. In the face of silent disapproval and open hostility, they
have confronted the stigma of disability and their children anyway.
With the story of Teresa Streckfuss, who had two babies affected by anencephaly.
Baxter Family Drama – Sunrise Series
by Karen Kingsbury
Tyndale House Publishers 2007 - 2008
Summer ISBN-10: 084238748
Someday ISBN-10: 0842387498
Sunset ISBN-10: 0842397587
Christian Fiction
Summer
The Baxter family learns that Ashley and Kari are both pregnant, but an ultrasound reveals that something is wrong
with one of the babies. Ashley's daughter Sarah has anencephaly. As the summer progresses, the sisters pray for a miracle
while trying to face the unthinkable. It's in this trying season that they must all learn the lesson God has been trying
to teach them--He is still in control, and He will be with them regardless of the outcome.
Someday
Ashley on her journey of grief and healing from the death of her daughter Sarah.
Sunset
Ashley is pregnant with a subsequent baby and has to face her fears.
About Grief
Grieving the Child I Never Knew
A devotional companion for comfort in the loss of your unborn or newly born
By Kathe Wunneberg
ISBN 0310227771
A devotional companion offering comfort, the reassurance of God's presence, and strength
for the journey through grief to healing for those who have lost a baby. Kathe Wunneberg
lost one of her children due to anencephaly.
Letters to Gabriel
By Karen Garver Santorum
CCC of America; (April 9, 1998)
ISBN-10: 1568145284
(No relation to baby Gabriel in the book Waiting With Gabriel.) Letters to Gabriel is a very faithful spirit-filled
collection of letters written by Karen to her unborn son, Gabriel. Every chapter is a short heartfelt note that starts
with scripture and ends with a simple beautiful prayer for her baby. Absolutely beautiful! Gabriel does not have
anencephaly, but the experience and emotions are just the same. Karen is an amazing woman and she continues to write
to Gabriel for the following year after his death. Her open emotions, truthfulness and courage helped me in preparation
for the loss of my own son. In addition to Karen's story, her husband is a former Senator who was fighting in the U.S.
Senate against partial birth abortions. Karen shares how her faith helped her come to terms with that situation also.
Review by Shawna, mom to Lane
An Exact Replica of a Figment of my Imagination
by Elizabeth McCracken
Publisher: Little, Brown and Company; (September 10, 2008)
ISBN-10: 0316027677
This one has close to no faith-base of any kind (admitted by the author herself). I am thankful for how Elizabeth
is very raw and honest in how she expresses her loss; how she deals with her hurt and facing the world afterward;
and especially how she deals with the emotions of being pregnant again after her first baby's death.
Review by Shawna, mom to Lane
A Rose in Heaven
by Dawn Siegrist Waltman
Publisher: Paradise Publications (November 1, 1999)
ISBN-10: 1929678037
If I were to ever write a book about my time with my precious Lane, I could only hope it would be as comforting as
'A Rose in Heaven'. It is similiar in format to 'Letters To Gabriel' in that each chapter is a short journal-like
entry that opens with Scripture and ends with a beautiful prayer. But, it varies in two major ways: 1) Dawn focuses
specifically on the days after her sweet baby Molly has died, and not on the journey leading up to Molly's birth 2)
Dawn writes directly to the reader. She calls us her 'Dear Friends' and then she tenderly confirms that it is okay
to feel the way we feel about our loss. She shares the beauty and pain of moving forward. And she shares specific
situations that only mothers like us could understand. I was in tears because I have known those exact moments too.
The ending prayers are Dawn's prayers to us as her new friends. You can sense her desperate need to comfort everyone
that reads her book and that has walked the same path.
Review by Shawna, mom to Lane
Children's books:
Talking to children about death is never easy. Using storybooks can
be a good way to open these hard conversations and they can also give
adults the language to make it easier. Reading stories over and over
can really help children understand as they often need things to be
repeated, again and again.
Here are some examples of how story books can be used to help children
understand what happens when someone or something dies:
https://www.childhoodbereavement.ie/other-events-and-information/storytelling-starting-difficult-conversations-with-children/
Why We Need a Children's Book About Death:
https://www.thegospelcoalition.org/article/children-death/
Recommended Books:
The Moon Is Always Round
by Jonathan Gibson
New Growth Press
ISBN 9781645070276
Even young children want answers to the hard questions about God and
suffering. In The Moon Is Always Round, seminary professor and author
Jonathan Gibson uses the vivid imagery of the moon to explain to children
how God's goodness is always present, even when it might appear to be
obscured by upsetting or difficult circumstances.
In this beautiful, full-colour illustrated book, he allows readers to
eavesdrop on the conversations he had with his young son in response to
his unborn sister's death. Father and son share a simple liturgy together
that reminds them that, just as the moon is always round despite its different
phases, so also the goodness of God is always present throughout the
different phases of life.
A section in the back of the book offers further biblical help for
parents and caregivers in explaining God's goodness to children.
Jonathan Gibson reminds children of all ages that God's goodness is
present in the most difficult of times, even if we can't always see it.
Wherever You Are: My Love Will Find You
by Nancy Tillmann
I wanted you more than you'll ever know, so I sent love to follow
wherever you go... Love is the greatest gift we have to give our children.
It's the one thing they can carry with them each and every day. If love
could take shape it might look something like these heartfelt words and
images from the inimitable Nancy Tillman. Here is a book to share with
your loved ones, no matter how near or far, young or old, they are.
God Gave Us Heaven
by Lisa T. Bergren
With tender words, her Papa describes a wonderful place, free of sadness
and tears, where God warmly welcomes his loved ones after their life on
earth is over. Little Cub and Papa spend the day wandering their beautiful,
invigorating arctic world while she asks all about God's home: How do we get
to heaven? Will we eat there? Will I get to see you in heaven? Papa patiently
answers each question, assuring her that...
"Heaven will be full of everything good."
This gentle story provides satisfying answers for a young child's most
difficult questions about what happens after this life, inviting
"little cubs" to find comfort in knowing that God Gave Us Heaven.
Water Bugs and Dragonflies:
Explaining Death to Young Children
by Doris Stickney
In Water Bugs and Dragonflies, Doris Stickney tells the story of a
small colony of water bugs living below the surface of a pond. Whenever a
bug leaves the pond, those left behind are faced with the mystery of their
absence. Stickney invites children into the question of their absence.
https://www.thepilgrimpress.com/collections/water-bugs-and-dragonflies
Summerland: A Story About Death and Hope
by Eyvind Skeie
A child travels through the Dark Valley which is death and emerges
into the Summer Meadow of the afterlife, where she meets Jesus and
experiences his comfort and love.
Something Very Sad Happened:
A Toddler's Guide to Understanding Death
by Bonnie Zucker
Something Very Sad Happened is intended to be read to two- and three-year-old
children to help them understand death and process the loss of a loved one.
When a loved one dies, it can be hard to know how to explain it to a young child,
particularly if you are grieving the loss yourself. Written at a developmental
level that is appropriate for two- and three-year-olds, the story explains death;
lets children know that it is okay to feel sad; and reassures children that they
can still love the person who died, and the person who died will always love them.
Since the two- to three-year-old child cannot read, this story is intended to be
personalized; certain words are color-coded in red to cue to you to substitute
with the appropriate names and pronouns for the person who died.
My Sibling Still:
for those who've lost a sibling to miscarriage, stillbirth, and infant death
by Megan Lacourrege
My Sibling Still is written as a love letter from a sibling lost to miscarriage,
stillbirth, or infant death to any surviving siblings. It walks through the
emotions that a child and his or her family may experience following a loss
while also depicting the loving presence of the deceased child in the family's
life. With gentle words and comforting pictures, this book offers a beautiful
way for the entire family to remember and honor any lost little ones. My Sibling
Still is accessible whether the loss happened years ago or yesterday, whether a
sibling was born at the time of the loss or came afterwards. Most of all, with
an affirming message of hope through suffering, it reminds us that our relationships
with the little ones who have gone before us continue after death.
This Book Is for All Kids, but Especially My Sister Libby. Libby Died.
by Jack Simon
Jack Simon was five years old when his sister, Libby, died. She'd been born
with a rare disorder and wasn't expected to survive six months. But she lived
three and a half years, giving Jack plenty of time to get to know her. When
she died, Jack struggled to understand how God could take away his little sister.
Everyone experiences grief, but children express it differently. Afraid to ask
questions that might make someone sadder, children often keep their sorrow locked
inside. Jack's mom, Annette, encouraged her son to talk about his pain, and she
insightfully began a diary. Jack's questions eventually became the picture book
This Book Is for All Kids, but Especially My Sister Libby. Libby Died.
Goodbye Sister
A sibling's book for infant loss
by Kimberly Newton
Kimi is looking forward to becoming a big sister. After learning that the new
baby has died, Kimi and her family grieve together. Kimi's parents reassure
her that she will always be a big sister.
Goodbye Sister
is a story for children who have experienced the loss of an infant sibling due to stillbirth or miscarriage.
Always My Twin
Valerie R. Samuels
ISBN:978-1-41206-036-3
Always My Twin , for young children who have experienced the death of their twin
sibling, is a book for any child whose twin died before birth, after birth or as a
young child. The story is based on the author's own experience of losing a newborn
twin daughter in 2002. The book tells the story through the eyes of a young girl
whose twin sister dies shortly after their births. She begins her story with sharing
the womb with her twin, the joy of her family anticipating the arrival of twins, the
family's pain of losing one of their precious babies, and her own expressions of grief
for her twin's death. The surviving twin also shares with the audience the precious ways
in which she and her family remember her twin throughout the year. Included are
interactive pages for the reader to respond to with pictures, identifying feelings
and providing family information.
Heartache, healing and hope are evident through the author's words and the illustrator's
artwork in telling the story of loss and love. Whether twins were identical or fraternal,
separated by death at birth or years later, Always My Twin will find a special place in
the hearts of surviving twin children and their families. A list of support resources for
families who have experienced the death of a baby (including the death of a twin or higher
multiple) is available in the back of the book.
Please write us to suggest other helpful books that should be added to this list.
Last updated January 19, 2024
