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 babys 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.
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.
Introduction
1. The New: Receiving Your Babys Diagnosis
2. What Now? Making Decisions about Continuing Your Pregnancy
3. The Emotional Journey: Grieving and Adjusting to Your New Path
4. Waiting with Your Baby: Settling in for the Rest of your Pregnancy
5. Making Medical Decisions: Choosing Care for Your Baby
6. Getting Ready: Preparing for Your Babys Birth, Life, and Death
7. Welcoming Baby: Birth Experiences and Meeting Your Baby
8. Saying Goodbye: Holding On and Letting Go
9. Continuing Your Journey: After Your Baby Dies
10. Reflections
Appendix: Sample Outline for a Perinatal Palliative Care Birth Plan
Notes
Index
Now updated and expanded-a gentle and comprehensive guide for parents expecting a baby with a prenatal diagnosis of a life-limiting condition.
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, 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 lifes 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, Now I Lay Me Down to Sleep
