Littérature
Un enfant pour l'éternité
Isabelle de Mézerac
Éditions du Rocher, 2004
ISBN 2-268-04960-4
L'histoire vécue de l'auteur qui attendait un enfant atteint de trisomie 18. Après l'annonce de ce diagnostic terrible,
elle est sa famille vont faire face à cette mort annoncée et accompagner Emmanuel de tout leur amour dans sa courte vie.
La deuxième partie du livre contient des textes très intéressants sur les possibilités de soins palliatifs pour
nouveau-nés.
Tabéa & Léa, la vie malgré tout
Nelly Block & Constanze Nolting
ISBN 2-940335-12-5
Le diagnostic est posé : bébés siamois soudés à la tête! Que faire : avorter ? Nelly et son mari décident de se confier
en Dieu et de garder les enfants. Après l'accouchement, il s'avère que les jumelles n'ont aucune autre malformation.
Quelques mois plus tard, ils entrevoient la possibilité d'une opération de séparation. Un médecin de Baltimore est
d'accord de procéder à l'intervention. L'opération nécessitant une préparation minutieuse sur place, ils partent assez
rapidement pour les Etats-Unis.
Cette intervention si délicate va-t-elle réussir ? Vous le saurez en lisant cet ouvrage qui relate avec une grande
authenticité les hauts et les bas traversés par Nelly et son mari durant cette épreuve.
Cerian, mon enfant
Sarah Williams
Éditions Fard, 2007
ISBN 978-2-86314-348-3
L'auteur nous partage son témoignage personnel, son histoire de la grossesse de son bébé Cerian. Elle apprend que son
bébé ne survivra pas car il souffre d'une dysplasie thanatophore (mortelle). Elle relate l'histoire du choix de porter
leur enfant jusqu'à son terme afin de lui prodiguer simplement tout leur amour.
Pleurer l'enfant que je n'ai jamais connu
Traverser l'épreuve d'une fausse couche ou d'un deuil périnatal avec l'aide de Dieu
de Kathe Wunnenberg
Edition Famille Je t'Aime, 68500 Guebwiller, France 2004
ISBN: 2-911365-15-1
Question de vie et de mort
La foi et l'éthique médicale
de John Wyatt
Editions Excelsis 2000
ISBN: 2-914144-12-1
Les Deuils D'Enfants
de la conception à la naissance
Etudes sur la mort, Thanatologie 2001 - n° 119
L'Esprit Du Temps, 2001
ISSN 1157-0466
L'Euthanasie Foetale
Etudes sur la mort, Thanatologie 1999 - numéro hors série
L'Esprit Du Temps, 1999
ISSN 1157-0466
Les enfants en deuil
Portraits du chagrin
M. Hanus et B.M. Sourkes
Editions Frison-Roche, Paris, 1997, 2002
ISBN: 2-87671-265-2
Comment plonger dans ce monde différent qui inquiète
Nahoé Curtet, Sophie Zbaeren, journal sage-femme.ch 12/2008, pp. 30-32
Un couple décide de gader leur bébé après avoir pris connaissance
d'une handicap par amniocentèse. Rencontre entre la maman et la sage-femme.
Une initative par des parents, pour des parents
Josianne Brodart Senn, journal sage-femme.ch 12/2008, pp.34-35
Présentation de l'association prenat avec le témoignage de Esther Hänggi.
Livres en d'autres langues
My Child, My Gift
A Positive Response to Serious Prenatal Diagnosis
This is the best book for parents who got a serious prenatal diagnosis I've ever seen. 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.
More information about the book on the website mychildmygift.com
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.
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.
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.
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.
Dernière mise à jour de cette page: 06.02.2009
