A Gift of Time
A Gift of Time:
Continuing Your Pregnancy When Your Baby's Life Is Expected to Be Brief
By Amy Kuebelbeck and Deborah L. Davis, Ph.D.
Johns Hopkins University Press
Second edition September 2023
Now updated and expanded, A Gift of Time is a gentle and comprehensive 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 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.
Based on material from more than 160 parents from across the United States, Australia, Canada, Europe, and the U.K., 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 as well as health care professionals, it also features the concept of perinatal hospice & palliative care, which is continuing to grow worldwide.
Since it was first published in 2011, A Gift of Time has been adopted as a resource by many hospitals in the U.S. and around the world, and it has been a valued companion for many parents.The second edition of this gentle guide incorporates new published research and guidelines and includes additional vignettes from parents who have traveled this path more recently.
Caring and thoughtful, A Gift of Time helps parents embrace the extraordinary time they will have with their child.
TABLE OF CONTENTS
Chapter 1. The News: Receiving Your Baby's Diagnosis
Chapter 2. What Now? Making Decisions about Continuing Your Pregnancy
Chapter 3. The Emotional Journey: Grieving and Adjusting to Your New Path
Chapter 4. Waiting with Your Baby: Settling in for the Rest of Your Pregnancy
Chapter 5. Making Medical Decisions: Choosing Care for Your Baby
Chapter 6. Getting Ready: Preparing for Your Baby's Birth, Life, and Death
Chapter 7. Welcoming Baby: Birth Experiences and Meeting Your Baby
Chapter 8. Saying Goodbye: Holding on and Letting Go
Chapter 9. Continuing Your Journey: After Your Baby Dies
Chapter 10. Reflections
ABOUT THE AUTHORS
Amy Kuebelbeck, a journalist with experience at news organizations including the Associated Press and the Minneapolis Star Tribune, described her own experience of continuing a pregnancy with a life-limiting prenatal diagnosis in the memoir Waiting with Gabriel: A Story of Cherishing a Baby’s Brief Life. She is the founder and editor of perinatalhospice.org and has been invited to speak at numerous medical conferences in multiple countries about the topic.
Deborah L. Davis, Ph.D., is a developmental psychologist and expert in the emotional aspects of neonatal medical ethics and perinatal bereavement. She is the author of books including Empty Cradle, Broken Heart: Surviving the Death of Your Baby, first published in 1996 with a fourth edition in press.
For the second edition:
"A Gift of Time is an essential and magnificent resource for families and health care professionals alike. The parents' stories are powerful witnesses providing support, compassion, and practical advice to the reader. The book is an unparalleled companion to families as they walk along a difficult journey."
— Elvira Parravicini MD, director of the Neonatal Comfort Care Program at Columbia University Irving Medical Center
"Packaged within this Gift are the relationships nurtured and remembered over time. The authors capture a wide range of essential topics for parents, caregivers, and professionals who know what it means to live with uncertainty and hope. Their words on transformation describe the reality of one of life's greatest losses."
— Rana Limbo PhD RN FAAN, director emerita and co-founder, Resolve Through Sharing
"A Gift of Time is the best resource for parents navigating the difficult journey of baby loss. This book is written with sensitivity and compassion and gives practical information along with heartfelt stories. I wish this book had been available when I lost my babies."
— Gina Harris, chief executive officer of Now I Lay Me Down to Sleep
For the first edition:
"These knowledgeable authors speak eloquently for families, parents, prospective parents, and health care professionals across many disciplines ... 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 MD, neonatologist, pediatric bioethicist, palliative care expert, and lead author of Palliative Care for Infants, Children, and Adolescents
"This book is a valuable resource to help families find ways to make a very difficult experience more manageable and perhaps even meaningful. I think it is a 'must read,' but keep a box of Kleenex handy." — Diane Vargo RN MS CGC in the National Society of Genetic Counselors' Perspectives in Genetic Counseling
"An invaluable resource ... beautifully written, touching ... It is a must-read not only for parents who find themselves facing such a heart-wrenching situation, but also for those who care for and support these families." — Share Pregnancy & Infant Loss Support
"A wonderful book ... it is a great asset for couples who have not yet made a decision or who have already decided on a path forward." — International Journal of Childbirth Education
“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, neonatologist and director of the Perinatal Palliative Care Program at Brigham and Women’s Hospital, Boston, Massachusetts
"It offers hopeful options for families facing heartbreaking choices ... it's a surprisingly moving and even uplifting read for anybody, particularly those of us who love children with special needs." — Terri Mauro, 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.'" — Anita Catlin, DNSc FNP FAAN, Advances in Neonatal Care
"This informative and heartbreaking book provides information to parents and families in the critical area 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, PhD RN, Pediatric Nursing
A Gift of Time is available for a 30% discount directly from the publisher. Enter code HNAF at checkout, or call Johns Hopkins University Press customer service at (800) 537-5487. Bulk pricing also available from the publisher.