A Gift of Time: Continuing Your Pregnancy When Your Baby's Life Is Expected to Be Brief

by Amy Kuebelbeck, Deborah L. Davis

Overview

Now updated and expanded--a gentle and comprehensive guide for parents expecting a baby with a prenatal diagnosis of a life-limiting condition.

When prenatal testing reveals that a baby is expected to die before or shortly after birth, many parents choose to proceed with the pregnancy and embrace the time they are able to have with their baby, before birth as well as afterward. With compassion and support, A Gift of Time walks these parents step-by-step through this challenging and emotional experience--from receiving the diagnosis to coping with the pregnancy and making plans for the baby's birth and peaceful death.

The second edition of this gentle guide offers inspiration and reassurance through the voices of numerous parents who have walked this path with their beloved baby. Their moving experiences are stories not only of grief but of joy and peace. This edition:

- Expands the content substantially to incorporate new research and guidelines
- Features additional vignettes from more than 160 parents about their experiences and coping strategies
- Offers encouragement and more practical ideas for moving forward, including updated guidance for decision-making and ideas for embracing the time with the baby, from before birth to after death
- Describes the importance of perinatal hospice and palliative care, which has continued to grow worldwide since the first edition was published, and how to access this care

Drawing from parent experiences and published research, this new edition is full of practical suggestions for parents as well as health care professionals. Caring and thoughtful, A Gift of Time helps parents navigate this difficult news and the journey that follows.

Product Details

ISBN-13:	9781421446707
Publisher:	Johns Hopkins University Press
Publication date:	09/05/2023
Series:	A Johns Hopkins Press Health Book
Edition description:	second edition
Pages:	448
Product dimensions:	6.00(w) x 9.00(h) x 1.15(d)

About the Author

Amy Kuebelbeck (ST. PAUL, MN) is a journalist with experience at news organizations including the Associated Press and the Minneapolis Star Tribune. She described her experience of continuing a pregnancy with a life-limiting prenatal diagnosis in her memoir Waiting with Gabriel: A Story of Cherishing a Baby's Brief Life. She is the founder and editor of perinatalhospice.org and has presented and written extensively on the topic of perinatal hospice and palliative care. Deborah L. Davis, PhD (DENVER, CO), is a developmental psychologist, writer, and expert in neonatal medical ethics and perinatal bereavement. She is the author of Empty Cradle, Broken Heart and the coauthor of Parenting Your Premature Baby and Child. Her blog Laugh, Cry, Live explores a wide range of topics at PsychologyToday.com.

Table of Contents

Introduction xi

1 The News: Receiving Your Baby's Diagnosis 1

Before the Diagnosis 2

Understanding Diagnostic Prenatal Testing 4

Receiving the News 6

The Immediate Emotional Storm 13

2 What Now?: Making Decisions about Continuing Your Pregnancy 18

Facing the Decision 18

Options Presented 20

Perinatal Hospice and Palliative Care 26

Gathering Information 29

Sorting through Your Values 38

Making Decisions with Your Partner 42

Consulting with People You Trust 44

Deciding to Continue 46

3 The Emotional Journey: Grieving and Adjusting to Your New Path 53

Anticipatory Grief 54

An Overview of the Grieving Process 55

Evolving Emotions 59

Confronting Fears 67

Techniques for Coping 73

You and Your Grieving Partner 76

Your Other Children 79

Spiritual and Philosophical Aspects 85

Living in the Twilight of Death 87

Reclaiming Hope 88

Your Reorientation and Adjustment 91

4 Waiting with Your Baby: Settling in for the Rest of Your Pregnancy 93

Interacting with Others 94

Finding Support 111

Getting Appropriate Medical Care 115

Embracing the Time Remaining 130

5 Making Medical Decisions: Choosing Care for Your Baby 140

Researching Your Baby's Condition 141

Researching Your Baby's Treatment Options 142

Ambivalence about Medical Decisions 148

Seeking Outside Advice 150

Deciding to Wait and See 152

Opting for Hospice and Palliative Care 154

6 Getting Ready: Preparing for Your Baby's Birth, Life, and Death 165

Birth Planning 165

Wishes for after Your Baby's Birth 174

Including Your Baby's Siblings 181

Including Your Family and Friends 182

Other Practical Preparations 184

Preliminary Funeral and Burial Planning 184

Getting Closer to Birth 189

7 Welcoming Baby: Birth Experiences and Meeting Your Baby 193

Approaching the Time of Birth 194

When Birth Is Imminent 198

Meeting Your Baby 206

If Your Baby Lives after Birth 222

Taking Baby Home 233

8 Saying Goodbye: Holding On and Letting Go 246

Parenting Your Dying Baby 247

The Dying Process 247

Experiences with Babies as They Are Dying 248

Time with Your Baby after Death 264

Decisions about Your Baby's Body 275

Relinquishing Your Baby's Body 278

Funerals and Memorial Services 284

Your Baby's Final Resting Place 293

9 Continuing Your Journey: After Your Baby Dies 298

The Mother's Postpartum Recovery 299

Your Grieving Process Continues 302

Identifying Your Feelings 313

More Techniques for Coping 318

Regrets and Making Peace with Them 320

You and Your Partner 323

Your Other Children 326

Dealing with the Outside World 329

Subsequent Pregnancies 335

10 Reflections 339

Reflections on Your Journey 340

Spiritual Beliefs and Struggles 352

Long-term Reflections on Grief and Healing 360

Personal Transformation 367

If You Could Reach Back in Time... 371

Moving Forward with Gratitude 372

Appendix. Sample Birth Plan 375

Notes 377

Index 385

What People are Saying About This

Brian S. Carter

These knowledgeable authors speak eloquently for families, parents, prospective parents, and health care professionals across many disciplines who share in the experiences of life with, and without, a hoped-for 'perfect baby.' A thread of continuity runs across the gestational journeys of real parents grappling with bad and sad news, complex interwoven lives, and the hard work of seeking to bring joy into brief, yet eternal, moments together with their babies. The book will mean so much to those who have already endured these trials as well as those who are met daily with such news.

— Brian S. Carter, M.D., Monroe Carell Jr. Children's Hospital at Vanderbilt

Simon Manning

My team frequently counsels families coping with the heartache of managing a fetus or child with severe malformations that result in a life-limiting condition. We offer Ms. Kuebelbeck’s book to them, as many have found it a comforting resource. Her personal story and compassionate insights can help some families face the practical and emotional challenges they find along their journey.

From the Publisher

These knowledgeable authors speak eloquently for families, parents, prospective parents, and health care professionals across many disciplines who share in the experiences of life with, and without, a hoped-for 'perfect baby.' A thread of continuity runs across the gestational journeys of real parents grappling with bad and sad news, complex interwoven lives, and the hard work of seeking to bring joy into brief, yet eternal, moments together with their babies. The book will mean so much to those who have already endured these trials as well as those who are met daily with such news.
—Brian S. Carter, M.D., Monroe Carell Jr. Children's Hospital at Vanderbilt

My team frequently counsels families coping with the heartache of managing a fetus or child with severe malformations that result in a life-limiting condition. We offer Ms. Kuebelbeck’s book to them, as many have found it a comforting resource. Her personal story and compassionate insights can help some families face the practical and emotional challenges they find along their journey.
—Simon Manning, MD, Director of the Perinatal Palliative Care Program, Brigham and Women's Hospital

Editorial Reviews

[A] beautifully written, touching book. . . It is a must-read not only for parents who find themselves facign such a heart-wrenching situation, but also for those who care for and support these families.
—Share Pregnancy & Infant Loss Support

This informative and heartbreaking book provides information to parents and families in the critical are of continuation of pregnancy in light of a terminal diagnosis . . . Quotes from patients and families offer a view to help encourage, inspire, and help others feel they are not alone . . . The health care team can learn much from this text.
—Deborah Roberts, Pediatric Nursing

Amy Kuebelbeck and Dr. Deborah L. Davis have bravely published a wonderful book. . . For childbirth educators, this is an important read.
—Jeanine M. Estrada, International Journal of Childbirth Education

A compelling read . . . the book will, naturally, be most of use to families who are facing these heartbreaking situations right now and need guidance and fellowship. But for all of us who value the lives of children with special needs, especially those who society most devalues, it offers an incredibly hopeful message.
—About.com

The authors have achieved their goals in writing this book; they bring comfort to the families going through this traumatic time, and make the health care providers who read it determined to 'do better.'
—Advances in Neonatal Care

From the Publisher

A compelling read . . . the book will, naturally, be most of use to families who are facing these heartbreaking situations right now and need guidance and fellowship. But for all of us who value the lives of children with special needs, especially those who society most devalues, it offers an incredibly hopeful message.

About.com

The authors have achieved their goals in writing this book; they bring comfort to the families going through this traumatic time, and make the health care providers who read it determined to 'do better.'

Advances in Neonatal Care

This informative and heartbreaking book provides information to parents and families in the critical are of continuation of pregnancy in light of a terminal diagnosis . . . Quotes from patients and families offer a view to help encourage, inspire, and help others feel they are not alone . . . The health care team can learn much from this text.

Pediatric Nursing - Deborah Roberts

[A] beautifully written, touching book. . . It is a must-read not only for parents who find themselves facign such a heart-wrenching situation, but also for those who care for and support these families.

Share Pregnancy & Infant Loss Support

Amy Kuebelbeck and Dr. Deborah L. Davis have bravely published a wonderful book. . . For childbirth educators, this is an important read.

International Journal of Childbirth Education - Jeanine M. Estrada

This book is an insightful resource for those who have been there and for those who will someday live through such an experience.

Exhale: A Literary Magazine - Kathy Benson

A Gift of Time is a gift. With their beautiful writing, the authors honor the families who contributed to this book, comfort the families who will, sadly, need to make use of this book, and deepen and enrich every reader’s human experience... We owe them our gratitude.

MercatorNet.com - Dia Boyle

[A] beautifully written, touching book... It is a must-read not only for parents who find themselves facign such a heart-wrenching situation, but also for those who care for and support these families.

Difficult Decisions

Amy Kuebelbeck and Dr. Deborah L. Davis have bravely published a wonderful book... For childbirth educators, this is an important read.

— Jeanine M. Estrada

International Journal of Childbirth Education

This informative and heartbreaking book provides information to parents and families in the critical are of continuation of pregnancy in light of a terminal diagnosis... Quotes from patients and families offer a view to help encourage, inspire, and help others feel they are not alone... The health care team can learn much from this text.

— Deborah Roberts

Pediatric Nursing

A Gift of Time is a gift. With their beautiful writing, the authors honor the families who contributed to this book, comfort the families who will, sadly, need to make use of this book, and deepen and enrich every reader’s human experience... We owe them our gratitude.

— Dia Boyle

MercatorNet.com

This book is an insightful resource for those who have been there and for those who will someday live through such an experience.

— Kathy Benson

Exhale: A Literary Magazine