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A Gift of Time


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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

Table of Contents

1. The News: Receiving Your Baby's Diagnosis
Before the Diagnosis
Understanding Diagnostic Prenatal Testing
Receiving the News
The Immediate Emotional Storm
2. What Now? Making Decisions about Continuing Your Pregnancy
Facing the Decision
Options Presented
Perinatal Hospice and Palliative Care
Gathering Information
Sorting through Your Values
Making Decisions with Your Partner
Consulting with People You Trust
Deciding to Continue
3. The Emotional Journey: Grieving and Adjusting to Your New Path
Anticipatory Grief
An Overview of the Grieving Process
Evolving Emotions
Confronting Fears
Techniques for Coping
You and Your Grieving Partner
Your Other Children
Spiritual and Philosophical Aspects
Living in the Twilight of Death
Reclaiming Hope
Your Reorientation and Adjustment
4. Waiting with Your Baby: Settling in for the Rest of Your Pregnancy
Interacting with Others
Finding Support
Getting Appropriate Medical Care
Embracing the Time Remaining
5. Making Medical Decisions: Choosing Care for Your Baby
Researching Your Baby's Condition
Researching Your Baby's Treatment Options
Ambivalence about Medical Decisions
Seeking Outside Advice
Deciding to Wait and See
Opting for Hospice and Palliative Care
6. Getting Ready: Preparing for Your Baby's Birth, Life, and Death
Birth Planning
Wishes for after Your Baby's Birth
Including Your Baby's Siblings
Including Your Family and Friends
Other Practical Preparations
Preliminary Funeral and Burial Planning
Getting Closer to Birth
7. Welcoming Baby: Birth Experiences and Meeting Your Baby
Approaching the Time of Birth
When Birth Is Imminent
Meeting Your Baby
If Your Baby Lives after Birth
Taking Baby Home
8. Saying Goodbye: Holding On and Letting Go
Parenting Your Dying Baby
The Dying Process
Experiences with Babies as They Are Dying
Time with Your Baby after Death
Decisions about Your Baby's Body
Relinquishing Your Baby's Body
Funerals and Memorial Services
Your Baby's Final Resting Place
9. Continuing Your Journey: After Your Baby Dies
The Mother's Postpartum Recovery
Your Grieving Process Continues
Identifying Your Feelings
More Techniques for Coping
Regrets and Making Peace with Them
You and Your Partner
Your Other Children
Dealing with the Outside World
Subsequent Pregnancies
10. Reflections
Reflections on Your Journey
Spiritual Beliefs and Struggles
Long-term Reflections on Grief and Healing
Personal Transformation
If You Could Reach Back in Time . . .
Moving Forward with Gratitude
Appendix: Sample Birth Plan

About the Author

Amy Kuebelbeck, a former reporter and editor for the Associated Press, wrote about her experience losing a child in Waiting with Gabriel: A Story of Cherishing a Baby's Brief Life. 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 Empty Cradle, Broken Heart: Surviving the Death of Your Baby.


[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. 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

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