Amy Kuebelbeck - A Gift of Time: Continuing Your Pregnancy When Your Babys Life Is Expected to Be Brief

A GIFT OF TIME

Continuing Your Pregnancy When Your Baby's Life Is Expected to Be Brief

AMY KUEBELBECK AND DEBORAH L. DAVIS, PH.D.

2011 Amy Kuebelbeck and Deborah L. Davis
All rights reserved. Published 2011
Printed in the United States of America on acid-free paper
2 4 6 8 9 7 5 3 1

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Library of Congress Cataloging-in-Publication Data

Kuebelbeck, Amy, 1964
A gift of time : continuing your pregnancy when your baby's life is expected to be brief /
Amy Kuebelbeck and Deborah L. Davis.
p. cm.
Includes index.
ISBN-13: 978-0-8018-9761-0 (hardcover : alk. paper)
ISBN-10: 0-8018-9761-0 (hardcover : alk. paper)
ISBN-13: 978-0-8018-9762-7 (pbk. : alk. paper)
ISBN-10: 0-8018-9762-9 (pbk. : alk. paper)

1. Prenatal diagnosisPsychological aspects. 2. Newborn infantsDeath
Psychological aspects. I. Davis, Deborah L., 1955II. Title.
RG628.K84 2010
618.32dc222010013273

A catalog record for this book is available from the British Library.

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To the many parents who shared their experiences for this book,
you have our deepest gratitude. Your generosity truly honors
your babies' lives. Every one of your stories is a love story.
You will be a beacon of hope to many.

To all babies whose lives are briefyet still a gift.

If you are reading this book because a prenatal diagnosis indicates that your baby likely will die before or after birth, or if you are reading this because your baby has already died, we are so sorry. Our hearts go out to you and your family.

If you are still pregnant: As you face this devastating news, you might be considering continuing your pregnancy and embracing whatever remaining time you have with your baby, even if that time is only before birth. You might be certain of choosing this option or you might be leaning toward terminating your pregnancy. You might wonder which is the kinder and more bearable course.

If your baby has already been born and died: You are mourning the death of your baby as well as the loss of the future you dreamed you would have together. You might be struggling to make sense of your experiences and emotions, and you might be searching for reassurance that you are not alone.

Whatever your baby's diagnosis or your personal circumstances, this book describes and affirms the wide range of experiences and emotions that can follow a life-limiting prenatal diagnosis. It offers encouragement and practical ideas for moving forward, including guidance for decision-making, strategies for coping with the remainder of your pregnancy, and ideas for nurturing and being with your baby, before and after birth and death.

This book also describes the concept of perinatal hospice and palliative care, which is a new way of supporting parents whose babies are expected to die before or shortly after birth. While this book is addressed to parents, it offers insight for caregivers as well.

Parents who have continued their pregnancies are quoted throughout this book, sharing their experiences, feelings, and insights. More than 120 mothers and fathers shared their stories with us through written questionnaires, in-person interviews, websites, journal entries, and e-mail correspondence. These parents are from across the United States, as well as from Canada, Europe, and Australia. Some of these parents received outstanding support from their caregivers, extended family, and friends. Others felt abandoned or even faced hostility. But all of them received a devastating prenatal diagnosisa diagnosis of something expected to be fataland all of them chose to continue their pregnancies and embrace their time together with their babies.

We have generally chosen not to include the details of diagnoses, treatments, or circumstances, purposefully placing the focus on the emotional common ground you share with parents who have traveled this road before you. Their words can help affirm that you are not alone in your devastation and bewilderment. You are not the only one to feel terrified of continuing the pregnancy, to wish for a miracle, to be relieved that your baby will not have to live long with a debilitating condition, or to wonder what witnessing death will be like. Their words can help you establish realistic expectations for yourself and reclaim hope.

This book does not tell you how to feel, what to decide, or how to go about continuing your pregnancy. Rather, it supports your ability to make your own heartfelt decisions for your baby and see them through. Although these decisions may feel (or have felt) like an overwhelming burden and responsibility, they demonstrate your love for your baby and your concern for your child's best interests.

It is not necessary to read this book through from beginning to end. You can skip around to the parts that speak to you and pace yourself. Take in whatever seems helpful and pass by whatever isn't. Return to the passages you find particularly comforting and try reading other parts later. Even if you do read it cover to cover and then put it away, we encourage you to revisit this book from time to time. What you need may stand out each time, and what you need each time might be different. This book is meant to be your companion.

You may even find it reassuring to start by first turning to the chapters about birth planning, spending time with your baby after birth, or reflecting in hindsight. That way, you can see that this is not a journey just of grief but also one that is full of treasures. Some of the voices of anguish that you will meet in the early chapters will reappear as voices of joy and overwhelming love in describing the birth of their baby, and they appear again near the end of the book, reflecting on their journeys with voices of gratitude and peace.

You also may find comfort in other parents' experiences of personal growth and previously unrecognized strengths. You can be reassured knowing that others have survived this journey, discovered its meaning, and eventually acquired a sense of peace. You too can surviveand emerge transformed. This transformation is part of your baby's legacy.

If reading this book moves you to cry, try to accept this reaction. These are healing tears of grief, joy, and strength that mix with those of other parents. You are not alone.

Time is
Too slow for those who wait
Too swift for those who fear
Too long for those who grieve
Too short for those who rejoice
But for those who love
Time is eternity.

Henry Van Dyke
(1852-1933)

A GIFT OF TIME

At first, I thought the reason the technician was having problems getting measurements was because our little guy was so active. That illusion was soon to be shattered, and my life became divided into before and after. This was truly a defining moment for me. Perhaps it was the