A Gift of Time: Continuing Your Pregnancy When Your Baby's Life Is Expected to Be Brief (A Johns Hopkins Press Health Book)

I came across this book shortly after receiving a terminal diagnosis for one of my twins. I have been recommending it to my family and friends, both as a tool for those who are closest to and going through the process with me, and to help those a little further away understand what I am going through.The book is broken down into sections, allowing the reader to read the book in order or move around the topics without losing the thread. The authors, who have each been through the loss of a child, provide introductions and occasional explanations but mostly step back and let the voices of the various families to speak. The book is incredibly comprehensive, taking the reader through nearly every step of the process as far as I can tell, from receiving the news to going through funeral services, if that's desired. It discusses parts of the process that are especially difficult to think about, such as wanting to see one's baby even when you know they are likely to be severely disfigured. The complicated feelings that can arise in this situation, including joy and fear and guilt, are discussed without judgment. Religious perspectives are covered as a topic and come up fairly often in many of the individual quotes, but the book is overall neutral in this regard.A couple of things I would have liked to see more of: while there are references to families who have chosen to carry a twin pregnancy to term when only one child is expected to survive, but the book is unfortunately not comprehensive in this regard- perhaps because the situation is so very unusual. I also did not notice any discussion whatsoever of being a single parent in this situation, which as a single parent myself I was sorry for.Ultimately, this book is an irreplaceable resource for two main reasons:1. It will help parents feel understood and less alone. It validates the feelings and personal experiences of parents, family members, and friends who are involved in a situation of terminal prenatal diagnosis.2. It may help inform parents of rights they did not know they had. Many hospitals and medical professionals provide wonderful supportive services; some, unfortunately, may not have the training or sensitivity that one would wish for. The information and stories in this book will help parents understand what they can and might want to ask for or insist on. This is critically important in a time when everything is frightening and confusing and parents may feel helpless.I cannot recommend this book highly enough. If you or someone you know are in this devastating position, there will be something of use or comfort to you.

A Gift of Time is, indeed, a gift to all who are continuing a pregnancy or caring for someone in this challenging situation. The stories are the heart of the book; so many perspectives, suggestions, regrets, and lessons are shared. We made this a required book on our well-crafted booklist for our Baby Loss Doulas at LossDoulasInternational.com When these parent advocates/companions reach out to help families whose babies will die, they need Amy and Debbie's advice and the wise stories within the book, to help them learn how to give support, guidance and help with creating their Birth Plan or Vision. A Gift of Time helps ease the burden of how to plan for and meet special babies who are destined to die. There is no point in reinventing wheels, why not start with what others have done and work from there when one is heading toward such deep and important decisions? One of the resources that can in turn help with Birth Planning and the decisions ahead, is the book Empty Arms: Coping with Miscarriage, Stillbirth, and Infant Death. It is a gentle, practical, self-help guide to the hospital time and beyond.  Empty Arms: Coping After Miscarriage, Stillbirth and Infant Death . Sherokee Ilse

I would recommend this to both parents of children diagnosed with terminal illness in utero as well as those healthcare providers working alongside patients going through these situations. My son has been diagnosed with Trisomy 18 and I am currently 24 weeks pregnant and plan to carry to term. This has helped me gain a lot of positive insight and considerations and I feel that I can confidently move forward and try to find the blessings in this situation despite the despair. I also feel far more prepared to face a possible still birth or make the cumbersome medical decisions that may need to be made. There is a lot of practical wisdom found in the pages of this book from parents who have “been there.” This book will help ease fears, process grief, and give comfort to parents facing one of the hardest things a person can ever be asked to face.

This book has been a real blessing! I ordered one for my daughter and myself after my daughter received a diagnosis of Anencephaly at 4 mos. (now 5-1/2 mos.). This book has been a huge help to my daughter and myself... being able to read accounts from others who have been through this somewhat unique situation, and especially how they dealt with the reactions and attitudes from the medical community, friends, families and even strangers. We both realized early on, that is one of the biggest challenges. This is a heartbreaking journey, but being able to share the experience with others through books like this is definitely a comfort. I highly recommend this book if you find yourself on this journey, not only as a Mom, but for any one playing a supporting role. You might also try carefully chosen online forums for support as well.

In January of this year I gave birth to a son who had a chromosomal abnormality. I had known for a while that he was going to die, either before birth or shortly after. I was fortunate enough to have a lot of resources in planning for my son's birth/death, but I wish this book had come out in time for me to utilize its information. Unfortunately I could only read it in retrospect (I got my copy a week after my son had come and gone). But, I could see how the stories told by the parents, and the advice given, would be precious to someone continuing a "doomed" pregnancy. Even reading the stories in my "fresh" grief was comforting. It is very common to feel alone and scared. Just knowing that other people have lived through continuing a fatal pregnancy and survived is very reassuring. If you are reading this and know someone who is carrying a sick baby please buy this book for them! And better yet, check this website for a local perinatal hospice: [...]

18 years ago, when we found out half way through my first pregnacy that our baby was unlikely to survive, there was nothing like this book. As far as I know, it's the only book specifically for parents in this situation. Compiled from dozens of questionnaires and interviews, it shares the experiences of parents who have already travelled that journey - journeys of grief, but also of joy, as they adjust to a different pregnancy from what they were expecting, love and treasure this unexpected child and make the most of the time that they still have with him/her.Co-author, Amy Kuebelbeck, who lost her own son, Gabriel, in this way is an advocate of the perinatal hospice movement. Knowing of her, and that she is American, I had previously believed that this was something available only in the States. She explains, however, that this movement does not involve buildings or even dedicated teams, but an 'approach' or 'state of mind'. So, although some of the systems and services mentioned in the book aren't available outwith the USA, it remains thoroughly relevant for parents and medical/nursing staff in the UK.It's not a book to read cover to cover. I have, in order to write this review, but that's not what the co-authors intend. Rather it is to be used as a resource for dipping into and a 'companion' on the journey. For this purpose, the 'Contents' are listed very helpfully, in great detail, over three pages. For anyone determined to read it cover to cover in a short time (e.g. a member of the caring professions) I'd recommend studiously avoiding all the personal quotations the first time round, and just reading the paragraphs written by the authors. You can go back and read the quotations later, and more slowly. In the Preface, the authors themselves suggest beginning with the sections on 'Birth Planning', 'Meeting Your Baby' or the chapter on 'Reflections', saying: "Some of the voices of anguish that you will meet in the early chapters will reappear as voices of joy and overwhelming love in describing the birth of their baby, and they appear again, near the end of the book, reflecting on their journeys with voices of gratitude and peace."This book is long-awaited. We had the benefit of an open-minded, supportive consultant obsterician, and a hugely supportive network of church, friends and family, but not everyone does. This book will help those parents feel less alone, and give them confidence to ask for the help they need. For those not yet sure whether to continue with the pregnancy or not, this book will help them think through their decisions. Family, friends and pastors will gain insight and ideas as they reach out to provide support. Medical and nursing staff and others in the care professions will be encouraged as they see joy and treasure being found amongst grief and heartache, and will garner extra ideas of how they can play their part.Thankyou to the authors Amy and Debbie, to all the mothers and fathers whose words are used and to all the precious babies whose lives this book celebrates. "Those who sow in tears will reap with songs of joy."

I an so happy to have found this book. At 30+weeks pregnant with a baby with a terminal diagnosis I have been wandering lost and alone for months. Reading this book has bought immense comfort and helped me realise that although it's a path no one wants to walk I am not alone. Wish I had found it months ago.

The book covers all aspects of carrying to term. Very helpful. I think everyone who has been touched by fatal diagnoses of an unborn child should read this book.

A must read for healthcare professionals and couples

Excellent book! I wish I could have read it when we were carrying Lily! I wish it could be translated in French too...it is that good, comforting and filled with priceless information!