This memoir is the true story of parents who were told that their unborn baby had an incurable heart condition, confronting them with an impossible decision: to attempt risky surgeries to give their baby a chance at a longer life, or to continue the pregnancy and embrace their baby's life as it would unfold, from conception to natural death. The unforgettable journey that ensued would change not only their lives, but also the lives of everyone who came in contact with them. The book also addresses larger issues including questions about heroic medicine; attitudes and practices regarding pregnancy and infant loss; and new dilemmas created by advances in prenatal testing, including what to do if a test reveals a fatal problem. Waiting with Gabriel has become a premier resource for families in this situation as well as families who have lost a baby under other circumstances, and it is now being used by hospitals and clinics across the U.S. and Canada.
Editorial Reviews
From Publishers Weekly
In Waiting with Gabriel: A Story of Cherishing a Baby's Brief Life, AP journalist Amy Kuebelbeck shares the heartbreaking story of the brief life of her son, Gabriel, born with a rare heart defect. Kuebelbeck and her husband learned of the problem during the second trimester of her pregnancy, when they were told that he would only live for a few days after birth. In the memoir, she recounts that he actually lived only a few hours, but explains that his life was invested with meaning for his family and the hospital staff. This is not so much a book about grief and loss as it is a testament to the importance of recognizing grace and beauty in the here and now; faced with the imminent death of their son, Kuebelbeck learned to appreciate every moment with her husband and their other children. Although the book is enriched by a strong Roman Catholic perspective, readers of any faith will connect with Kuebelbeck's tale of spiritual growth through love and bereavement.
Copyright 2003 Reed Business Information, Inc.
Copyright 2003 Reed Business Information, Inc.
Review
"A mother's goodbye kiss ... heartbreaking, life-affirming and wise." --Richard Paul Evans, bestselling author of "The Christmas Box"
"Kuebelbeck's tender voice and graceful story inspire hope for anyone beset by pain and suffering. Medicine may not be able to prevent it. God may not spare it. But love sees them through it." --John Rosengren, Denver Catholic Register
"This book should be recommended for any family who has a pregnant woman and knows that the baby will not live or for parents whose baby is dying or has died in or outside an NICU." --Carole Kenner, Journal of Perinatal & Neonatal Nursing
"Although it brought me to tears, I would highly recommend this book both for families ... and also for the professionals who support them." --Perspectives in Genetic Counseling
"Exquisite and tender ... this book will walk with you, illuminating your path and comforting you with the realization that you are not alone." --Deborah L. Davis, Ph.D., author of "Empty Cradle, Broken Heart" --This text refers to the Paperback edition.
"Kuebelbeck's tender voice and graceful story inspire hope for anyone beset by pain and suffering. Medicine may not be able to prevent it. God may not spare it. But love sees them through it." --John Rosengren, Denver Catholic Register
"This book should be recommended for any family who has a pregnant woman and knows that the baby will not live or for parents whose baby is dying or has died in or outside an NICU." --Carole Kenner, Journal of Perinatal & Neonatal Nursing
"Although it brought me to tears, I would highly recommend this book both for families ... and also for the professionals who support them." --Perspectives in Genetic Counseling
"Exquisite and tender ... this book will walk with you, illuminating your path and comforting you with the realization that you are not alone." --Deborah L. Davis, Ph.D., author of "Empty Cradle, Broken Heart" --This text refers to the Paperback edition.
Product Details
Would you like to update product info or give feedback on images?
|
More About the Author
Discover books, learn about writers, read author blogs, and more.
Customer Reviews
|
Share your thoughts with other customers:
|
||||||||||||||||||||||
|
Most Helpful Customer Reviews
19 of 20 people found the following review helpful:
5.0 out of 5 stars
A very poignant book.,
By obsessive reader (Midwest City, USA) - See all my reviews
This review is from: Waiting with Gabriel: A Story of Cherishing a Baby's Brief Life (Hardcover)
I'll preface this review by saying that I am a physician. I know that elsewhere health care providers have been criticized for not knowing new statistics, etc. I will admit that I don't know the latest statistics. I have had recent (within the last year) experience caring for infants with HLHS. Some of those children have died; others are doing well. A previous reviewer wrote that you cannot create a whole heart out of half a heart. That is true; the best we can do is offer temporizing measures. But hey, sometimes the temporizing measures can last a couple decades-really not too bad. (By comparison, the lifespan of a coronary bypass graft is somewhere around 10 years-admittedly a ballpark but you get my point.) However, even some of the best centers quote a 25% mortality rate (as of Feb 2005). The children that survive remain medically fragile (we all have stories of children-usually between the first and second stage surgeries when they're particularly vulnerable-go from fine to dead in a matter of minutes.) Neurologic complications occur with some frequency and can be devastating. Survivors often go on to need a heart transplant-for which demand greatly exceeds supply. I cannot fault parents for choosing aggressive surgical therapy-I have a hard time looking at a perfect looking newborn and NOT doing everything possible to save her. At the same time, I cannot help but understand why equally loving parents would choose comfort care. Someone earlier said that children/parents living years later would not consider the surgeries torture: those are people whose children have survived to see the other side. I don't know what the parents of children who didn't survive the first surgeries would say. On the front end, with such high risk and no promise of success, it seems fairly natural that someone would wonder if it wouldn't be kinder to allow the child to live a short life surrounded by family and die peacefully. On the one hand is the only hope of survival accompanied by substantial risks of disability (physical or cognitive), many invasive procedures which may be painful, a not insubstantial risk of death at any stage and an uncertain (although apparently improving more and more) future at the end of successful operations. On the other hand, death is certain, but the pain and suffering and the uncertainty that paves the other road can be avoided.
When it comes down to it, I think it's a question of one's world view-whether or not one believes in God, in life after death, in whether there are things worse than death and what those things are, and how much faith one puts in medical advances and abilities. Many health care providers probably underestimate the benefits of medical care (ask one when they last felt like they actually saved someone's life-I can think of maybe two in the last five years) Some providers overestimate the benefits and underestimate the risks. Sometimes hopeful patients overestimate the pace and scope of medical advances. The truth lies likely somewhere in between. As for the book, which is after all the point of a book review. I respect greatly the physicians who offered the family the option of comfort care, because I know that they did not do so lightly. I respect Amy and her family for doing the best they could do to make an informed and loving decision for their son. It took courage to reach that choice, courage to carry the pregnancy to term. Courage to be helpless. Even more so, courage and love to so transparently share their experience with us in this book. I am not a mother. I strongly suspect that I would not handle either choice well, that I would be too self-protective to allow myself to really love a child with that much uncertainty in their life. It was costly to love Gabriel, every bit of love and joy was accompanied by pain. By sharing their story, I hope they are able to help others who must face similar circumstances.
11 of 12 people found the following review helpful:
5.0 out of 5 stars
Your wonderful gift of love for your son Gabriel,
By "hwchris" (Minnesota) - See all my reviews
This review is from: Waiting with Gabriel: A Story of Cherishing a Baby's Brief Life (Hardcover)
I laid my surviving twin son on my chest and bathed him with my tears as I read Amy's account of her journey with her son Gabriel. Her forthright, passionate, and loving account of her incredible journey to provide the most peaceful, meaningful, loving life for Gabriel has inspired me as I have coped with the loss of one of my twins on the day of his birth from a very rare cardiac defect, truncus arteriosus. I too, struggled with a prenatal diagnosis that indicated my son would most likely die the day of his birth, because he was showing signs of heart failure in utero and would most likely not be a candidate for surgery due to the extensiveness of his heart lesion. Other reviewers who criticize Amy for choosing comfort care, whether or not they have children with cardiac defects themselves, have missed the point of Amy's book entirely -- for Amy and her husband, as well as many other heart baby parents, the most loving choice they could make for Gabriel was to give him life and love and protect him from harm and pain. My baby's cardiologist said to me, as we elected not to pursue heroic efforts for our baby... "there are some things worse than death." While I know I would give anything in the world to hold my baby in my arms -- no matter that he wasn't "perfect" (whatever that means!)-- I have peace knowing that he knew only love during his short life of 13 hours -- and those hours were spent surrounded by his family -- not on an operating table where he almost certainly would have died alone, and in pain. It is more than a heartbreaking decision to admit that allowing your child, the child who has squirmed and wiggled beneath your heart for nine months, to die peacefully nestled in your arms is the best mothering you can do for your child. Congratulations to Amy for having the courage to share her journey with Gabriel with all of us. Her faith and the tender love she shows for her infant son have inspired me and helped me along my journey with grief. Thank you Amy.
6 of 6 people found the following review helpful:
5.0 out of 5 stars
I've been there too, Amy,
By
This review is from: Waiting with Gabriel: A Story of Cherishing a Baby's Brief Life (Hardcover)
This book is a beautiful tribute to all of us parents and families who have lost their babies due to HLHS. My son died a month ago after successfully making it through the first surgery, but had some complications and new diagnoses afterwards. I hadn't known about HLHS when I was pregnant and when my son was born we had to make a split second decision without having a chance to research our options. If I were to find out I was carrying another HLHS baby I would opt for compassionate care and no surgeries. I agree that HLHS is NOT life-compatable. Amy's book is touching. I have had the wonderful privilege recently to meet her and she is a beautifully caring woman. This book has helped me know that I am not alone in this journey. Thank you, Amy for this gift!
Share your thoughts with other customers: Create your own review
|
|
Inside This Book
(learn more)
Key Phrases - Statistically Improbable Phrases (SIPs):
(learn more)
hypoplastic left heart syndrome, pediatric cardiologist, birth center, birth plan, comfort care Key Phrases - Capitalized Phrases (CAPs): (learn more)
Father Baer, United States New!
Books on Related Topics | Concordance | Text Stats Browse Sample Pages:
Front Cover | Front Flap | Table of Contents | First Pages | Back Flap | Back Cover | Surprise Me!
hypoplastic left heart syndrome, pediatric cardiologist, birth center, birth plan, comfort care Key Phrases - Capitalized Phrases (CAPs): (learn more)
Father Baer, United States New!
Books on Related Topics | Concordance | Text Stats Browse Sample Pages:
Front Cover | Front Flap | Table of Contents | First Pages | Back Flap | Back Cover | Surprise Me!
Citations (learn more)
This book cites 18
books:
See all 18 books this book cites
1
book
cites this book:
- Hypoplastic Left Heart Syndrome by Hani A. Hennein M. D. FACS in Back Matter (1), and Back Matter (2)
- The Christmas Box by Richard Paul Evans in Front Matter, and page 56
- Hypoplastic Left Heart Syndrome (Developments in Cardiovascular Medicine) by Jack Rychik in Back Matter
- Pediatric Cardiology by Milan Samanek in Back Matter
- When Hello Means Goodbye by Paul Kirk in Back Matter
See all 18 books this book cites
- Parenting Your Premature Baby and Child: The Emotional Journey by Deborah L. Davis in Back Matter
Books on Related Topics
(learn more)
|
What Other Items Do Customers Buy After Viewing This Item?
Suggested Tags from Similar Products(What's this?)Be the first one to add a relevant tag (keyword that's strongly related to this product).
|
Sell a Digital Version of This Book in the Kindle Store
If you are a publisher or author and hold the digital rights to a book, you can sell a digital version of it in our Kindle Store.
Learn more
Customer Discussions
|
This product's forum
Active discussions in related forums
Search Customer Discussions
|
Related forums
|
