Helpful books and articles for parents affected by anencephaly:
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
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.
The story of Paxton Cole and Carys Rainn
by Keri and Aaron Kitchen
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.
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.
Genuine Faith and the Test of Love
Paul R. Etterling
Xulon Press, 2007
"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.
I Will Carry You
The Sacred Dance of Grief and Joy
By Angie Smith
B&H Publishing Group, Nashville TN, 2010
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.
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
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.
Waiting with Gabriel
A Story of Cherishing a Baby's Brief Life
By Amy Kuebelbeck
Loyola Press, Chicago 2003
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.
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)
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.
Always My Twin
Valerie R. Samuels
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.
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.
Grieving the Child I Never Knew
A devotional companion for comfort in the loss of your unborn or newly born
By Kathe Wunneberg
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)
(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)
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)
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
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
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.
Ashley on her journey of grief and healing from the death of her daughter Sarah.
Ashley is pregnant with a subsequent baby and has to face her fears.
Spontaneous pregnancy outcome after prenatal diagnosis of anencephaly
Jaquier M, Klein A, Boltshauser E.
BJOG 2006; 113:951-953
Medical article about the birth and life expectance of babies with anencephaly born at term or after a spontaneous delivery.
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Last updated December 13, 2016