Anencephaly Information
Home	Stories	Pictures	Facts	Prepare	Network	Family	Comfort	Links	About us	Sitemap

Helpful books and articles for parents affected by anencephaly:

Genuine Faith and the Test of Love

Paul R. Etterling

Xylon Press, 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.

Waiting with Gabriel

A Story of Cherishing a Baby's Brief Life
By Amy Kuebelbeck
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.

To order at: http://www.loyolabooks.org/store/title.asp?isbn=082941603X

Amy Kuebelbeck is writing a new book:

A Gift of Time:

Continuing your pregnancy following a terminal prenatal diagnosis.

If you have already traveled this path, she invites you to share your story in her upcoming book.

Information at http://www.agiftoftime.org

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.

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.

High-risk pregnancy and foetal diagnosis: your journey

by Stephanie Azry

Free Association Books

ISBN 1853439886

This book offers practical guidance to women who are suddenly confronted with medical diagnoses that place them in a high-risk category or indicate abnormalities in their developing babies. The author writes out of her own experience and gives a large place to the stories of other affected families.

Some medical information and information about termination can nevertheless be disturbing.

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.

Please write us to tell us about other helpful books.

webmaster