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A Gift of Time

The Harried Parent's Book Club Review

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A Gift of Time
Image courtesy of Johns Hopkins University Press

50-Word Review

Parents whose babies' lives were brief testify to their value and worthiness in a book that introduces the concept of perinatal hospice and palliative care for newborns, and seeks to convince grieving moms and dads that they can indeed bear it. It offers hopeful options for families facing heartbreaking choices.

250-Word Review

The death of an infant before or shortly after birth is something no parent wants to contemplate, much less read a nearly 400-page book about. Yet as prenatal testing becomes more detailed and commonplace, more and more couples are faced with the heartbreaking decision of what to do when the child they're expecting is diagnosed with a life-limiting disorder. Perinatal hospice offers an alternative to quick termination of such pregnancies, and allows families -- parents, siblings, grandparents, friends -- to spend the maximum amount of time nurturing and bonding with a child they'll know for far too little time.

A Gift of Time was written by Amy Kuebelbeck, who wrote about her own baby's brief life in Waiting With Gabriel, and Deborah L. Davis, a psychologist experienced in neonatal medical ethics and perinatal bereavement. It will be invaluable for couples making these plans for their child, especially since medical professionals may not be as up to speed as they should on this new possibility. Both the practical advice -- from diagnosis through birth plans to final moments and funerals -- and the personal sharing by dozens of parents whose stories wind through these chapters will be useful and validating. Family members and friends may also benefit from reading it -- to realize that their loved ones aren't the first to walk this unconventional road, and that it can be a worthwhile experience for all. In fact, it's a surprisingly moving and even uplifting read for anybody, particularly those of us who love children with special needs.

Is This Book for You?

It's definitely for you if: you have been told your unborn child will not live long and are trying to decide what to do ... you're committed to carrying your severely disabled baby to term and need to know about perinatal hospice and palliative care ... you need to know that other parents have made it through this terrible transition and survived.

It may be for you if: you are a friend or family member of someone facing this situation and want to provide support ... you are a friend or family member of someone making these plans and need reassurance that this is something that's done ... you're troubled by the way prenatal testing often leads medical professionals to suggest termination of a pregnancy, even for kids with a longer and healthier lifespan than the ones profiled here.

It may not be for you if: you're not currently dealing with this sort of prenatal diagnosis ... you've never had to deal with it ... you don't want to even start to imagine ever having to deal with it, even just to be prepared.

It's definitely not for you if: the last thing you want to read is a book about babies dying ... there's no way you will ever doubt the wisdom of terminating a pregnancy in this situation, or of aggressively pursuing every last invasive medical intervention ... you want to believe that doctors always know the right thing to do.

Table of Contents

  1. The News: Receiving Your Baby's 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 Baby's 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 Birth Plan

Try This Now

You can get a good preview of the advice offered in A Gift of Time on the authors' website at PerinatalHospice.org. The Sample Birth Plan in the book's appendix is downloadable from the site, and a FAQ provides a good overview of the concepts of perinatal hospice and palliative care as they are described in the book. Also available is a listing of resources for parents that can provide you with additional information and personal experiences.
Disclosure: A review copy was provided by the publisher. For more information, please see our Ethics Policy.

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