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
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A Gift of Time: Continuing Your Pregnancy When Your Baby's Life Is Expected to Be Brief
(Johns Hopkins University Press, 2011)
A Gift of Time is a gentle and practical 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 an unborn child is expected to die before or shortly after birth, a growing number of parents are choosing to proceed with the pregnancy and to welcome their child into the world. With compassion and support, A Gift of Time walks them step-by-step through this challenging and emotional experience—from the infant's life-limiting prenatal diagnosis and the decision to have the baby to coping with the pregnancy and making plans for the baby’s birth and death.
A Gift of Time also offers inspiration and reassurance through the memories of numerous parents who have loved a child who did not survive. Their moving experiences are stories of grief—and of hope. Their anguish over the prenatal diagnosis turns to joy and love during the birth of their child and to gratitude and peace when reflecting on their baby’s short life.
Based on material from more than 100 parents from across the U.S., Canada, Europe, and Australia, 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 and for caregivers, it also features the innovative concept of perinatal hospice & palliative care. Caring and thoughtful, the book helps parents embrace the extraordinary time they will have with their child.
Amy Kuebelbeck, a former reporter and editor for The Associated Press, 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 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.
"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 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