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Waiting with Gabriel: A Story of Cherishing a Baby's Brief Life
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 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.
184 pages, Hardcover
First published February 1, 2003
5 people are currently reading
247 people want to read
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Displaying 1 - 30 of 37 reviews
August 6, 2020
I read this for a book report for a course I'm taking. I did pick it from a list of about 15 or 20 other books, so I did want to read it and I'm glad I did. It feels strange to say that, but I am.
There's a lot to unpack from this book. Lots of take aways. It's hard to rate a memoir in my opinion since a memoir is someone's life and you read it knowing that someone went through it and lived what you are reading. Overall, a good read about a heart wrenching topic. This is definitely a book I'll reread one day as well as one that will stick with me for a long time.
It feels wierd to recommend such a book, but I do recommend it. There's something about it that feels like it should be read by other people and not just parents experiencing loss or people going into emotional fields.
There's a lot to unpack from this book. Lots of take aways. It's hard to rate a memoir in my opinion since a memoir is someone's life and you read it knowing that someone went through it and lived what you are reading. Overall, a good read about a heart wrenching topic. This is definitely a book I'll reread one day as well as one that will stick with me for a long time.
It feels wierd to recommend such a book, but I do recommend it. There's something about it that feels like it should be read by other people and not just parents experiencing loss or people going into emotional fields.
March 2, 2021
Such a gift to read this book while we were waiting for our little one. Amy walks us through her journey of parenting her son from this brief life to the next. To feel as those she is holding our hand in the the face of death was one of the greatest gifts of hope that I experienced during my darkest time.
May 28, 2009
This is a heartbreakingly fantastic look into what it's like for parents to lose a new baby. I don't think Kuebelbeck could have done a better job in any way, shape, or form. I felt like I knew the family the entire way through. Kuebelbeck's writing is fantastic and she really brings the reader in on this terrifying journey that she and her husband, family, and friends were forced to take.
The Kuebelbecks' found out during a routine ultrasound that their only son, their third child, had HLHS which in essence, left him with only a half a heart. Kuebelbeck took me through the "options" (which I actually hesitate to call options really) that they were given, what they felt about each, and why they chose comfort care for their precious son.
She also did an extensive amount of research, whether there was added research for the book or it all was gained while she was still carrying their son, all of it is invaluable. I learned so much about so many things from the book. Kuebelbeck goes from giving precise research to the grief process and everything in between.
She touches on the fact that when the baby lost is so young, or still in the womb, that parents are supposed to take it in stride and get over it, have another one, etc. As if it wasn't still your precious baby who died. She touched on how fathers and men in general are supposed to carry theur grief differently than women, who are allowed a measure of falling apart usually that men aren't.
She also told the reader about Gabriel himself. His life lasted for two and a half hours yet I know so much about him. Kuebelbeck included his little handprint on the very last page. I can't remember how many times I cried while reading about Gabriel.
I would recommend this book so easily to anyone who has ever lost a baby, whether that many actually took a breath outside the womb or not, whether the baby passed away 60 years ago or yesterday, whether the parents are "over" the grief or not. This is an absolutely beautiful and touching book.
The Kuebelbecks' found out during a routine ultrasound that their only son, their third child, had HLHS which in essence, left him with only a half a heart. Kuebelbeck took me through the "options" (which I actually hesitate to call options really) that they were given, what they felt about each, and why they chose comfort care for their precious son.
She also did an extensive amount of research, whether there was added research for the book or it all was gained while she was still carrying their son, all of it is invaluable. I learned so much about so many things from the book. Kuebelbeck goes from giving precise research to the grief process and everything in between.
She touches on the fact that when the baby lost is so young, or still in the womb, that parents are supposed to take it in stride and get over it, have another one, etc. As if it wasn't still your precious baby who died. She touched on how fathers and men in general are supposed to carry theur grief differently than women, who are allowed a measure of falling apart usually that men aren't.
She also told the reader about Gabriel himself. His life lasted for two and a half hours yet I know so much about him. Kuebelbeck included his little handprint on the very last page. I can't remember how many times I cried while reading about Gabriel.
I would recommend this book so easily to anyone who has ever lost a baby, whether that many actually took a breath outside the womb or not, whether the baby passed away 60 years ago or yesterday, whether the parents are "over" the grief or not. This is an absolutely beautiful and touching book.
November 24, 2012
Undoubtedly one of the hardest things I've ever read but something I felt I had to. There's so much I can't understand or feel as deeply as the people I love who have felt such tremendous loss. This book helped. The honesty and depth of emotion that Amy and her family were willing to share was deeply moving. For anyone who has lost a child, I can only imagine how comforting this COULD be. And for those of us who have not, but who are desperate to help and to understand, I think this might very well be invaluable.
Want to read
November 11, 2014I keep looking at this book on GR and wondering if I'll ever have the courage to read it - like I'm waiting for the grief of our daughter's passing due to HLHS to be over so I can read this without all the memories to come flooding back. Unfortunately, I don't think that time will ever come so I just need to be ok in my grief and let myself feel vulnerable enough to let it surface again. I know I don't have to read this book, but I want to know Gabriel's story and pray for him and his family.
March 26, 2013
It's hard not to give a book like this 5 stars, but I have read others like it that were not nearly as well-written or well-researched. The book is fascinating--a perfect blend of scientific facts and statistics and raw human emotion. Yes, you should only read it if you are up for a good cry lasting half the book at least. It's a quick read, but leaves you with a big emotional impact. For me, it helped me share in the family's sorrow while reminding me how lucky I am.
July 22, 2016
Amy Kuebelbeck writes about a gut-wrenchingly horrible experience with graceful prose and compassionate language.
The beginning of this book mirrored my own experience so closely that I was spooked by the similarities. And the research that she presents is a helpful addition that adds valuable context for the underlying emotions throughout. While my own journey is not a religious one, I still found myself in a lot of this book.
The beginning of this book mirrored my own experience so closely that I was spooked by the similarities. And the research that she presents is a helpful addition that adds valuable context for the underlying emotions throughout. While my own journey is not a religious one, I still found myself in a lot of this book.
March 28, 2009
Everyone should read this book! It touched my heart to get a glimpse into the tough decisions and situations that a family deals with when losing a child. As a nurse in a Newborn ICU I thought it was especially good to read.
March 19, 2009
Memoir of the pregnancy, birth, and death of Kuebelbeck's third child and only son. Very emotional, without being overdramatic. The book speaks both to the feelings of any parent who has lost a child and to explaining the experience to those who have not.
February 3, 2021
By one of the authors of A Gift of Time, Waiting with Gabriel is the author’s account of her own family’s experience with perinatal hospice and infant loss. Kuebelbeck and her husband learned five months into their third pregnancy that their unborn son had HLHS—meaning that, although he was safe in the womb, his heart would fail after birth and he would die. There is no cure for the condition; the only medical option that can sometimes delay death is a series of high-risk, intensive open-heart surgeries after birth, assuming the infant lives long enough to begin the protocols. The Kuebelbecks were therefore faced with a choice between this kind of medical intervention or allowing Gabriel’s life to end on its own. They decided to shower him with love for the rest of his short life without painful medical interventions.
This book is a short and fairly easy read (although still emotionally taxing). It could be a gift for parents needing to know another family’s story and to work through some of their heartbreak with a glimpse of some of what the future could hold. It is also a single perspective that is easier to take in than A Gift of Time—but about as comprehensive in its own way. It can also be helpful for those wanting to walk alongside struggling families but who want to know how they might be able to help.
Of note, Kuelbeck is a self-described spiritually intrigued but not devout Catholic. This is not really a theological reflection in any way. While she does not uphold “angel” mythology, there are a few more universalist perspectives, including an odd reference to "God the Mother and Father" at one point.
This book is a short and fairly easy read (although still emotionally taxing). It could be a gift for parents needing to know another family’s story and to work through some of their heartbreak with a glimpse of some of what the future could hold. It is also a single perspective that is easier to take in than A Gift of Time—but about as comprehensive in its own way. It can also be helpful for those wanting to walk alongside struggling families but who want to know how they might be able to help.
Of note, Kuelbeck is a self-described spiritually intrigued but not devout Catholic. This is not really a theological reflection in any way. While she does not uphold “angel” mythology, there are a few more universalist perspectives, including an odd reference to "God the Mother and Father" at one point.
November 22, 2024
I picked Waiting with Gabriel: A Story of Cherishing a Baby's Brief Life from a list of novels for a theology class. I am so glad that this is the one I picked. This is a heavy book discussing a very difficult topic, but Kuebeleck does it with such grace. I am better for having read this book, and I encourage you to read it as well.
August 14, 2017
I'm 6 months pregnant with a baby boy who has a terminal genetic disorder called Trisomy 18. This book was sent to me by an organization, and I'm so thankful. Amy's story is inspiring. I hope I can celebrate my Spencer's life with beauty, passion, and purpose like Amy celebrated Gabriel's. This book helped me know what I can expect in the near future, and taught me that my thoughts are not weird. All I can say is, "Thank you, Amy."
July 13, 2021
As a NICU nurse, it’s really interesting to read a telling of an hours-old newborn’s life, And all leading up to it/after it ended. It’s enabled me to practice with more compassion and empathy. These families endure the worst time of their lives, and it’s important for us as nurses to be their rock and their advocates. Wonderful read that I’m sure many other families coping with the illness of their child would benefit from reading!
March 29, 2018
A memoir about discovering that baby Gabriel has Hypoplastic Left Heart Syndrome (HLHS) and a parents’ heartbreaking task of having to make a decision for Gabriel. This book brings awareness and a the realism of a families grief to many facets of this devastating fatal condition that affects unborn and newborn babies.
February 8, 2022
What a bruitiful book of love and loss. I will carry Gabriel with me whenever I am encountering families facing the death of a child and will hold the words to love well, grieve well, and remember well.
March 5, 2018
I absolutely loved this book. Truly heart breaking, but also a wonderful eye opener. The strength some people have to put forth is truly amazing.
Read
March 24, 2020As recommended for work.
November 28, 2023
Such a wonderful book about a sad story
December 30, 2020
Beautiful reflection on the dignity and meaning in death
October 10, 2019
i really enjoyed this book. My heart went out to Amy and her family. I learned a lot about HLHS (Hypoplastic left heart syndrome). This is a congenital deffect of the heart. I was really impressed with this wonderful book.
November 24, 2012
This is a biased and completely unfair review.
I felt very much heartbroken while reading this, but in truth, I found myself reading and waiting for something to hurt. I waited for my diaphragm to tighten. I wanted my eyes to water.
Nothing happened.
Of course, I don't need to explain that the story is tragic. No baby should die. No parent should experience this.
But, what is it about human nature that urges us to find more, more, more! Hurt me more! Tell me more! That didn't hurt at all. Is that all you have?
Am I searching for proof that I can still feel pain? Am I reading these books as a sort of pulse-check, grasping for visceral reactions and emotions to stir within me?
I will tell you I felt none. I felt as though this were a nicely packaged facts and recounting memoir. I felt the author had a bit of an agenda on the side of infant-loss awareness and sensitivity. None of this is wrong or offensive.
The story I read in these pages was sterile and clean. I kept thinking that this isn't the horror I know. Where is the raw, heartbreaking emotion?
I fear I am truly numb and desensitized to everything.
I held a baby in my arms that died hours after I birthed her.
The next day, I did it again with her brother.
I can feel no more. I live horror and terror. I am a stone, unmoved.
I felt very much heartbroken while reading this, but in truth, I found myself reading and waiting for something to hurt. I waited for my diaphragm to tighten. I wanted my eyes to water.
Nothing happened.
Of course, I don't need to explain that the story is tragic. No baby should die. No parent should experience this.
But, what is it about human nature that urges us to find more, more, more! Hurt me more! Tell me more! That didn't hurt at all. Is that all you have?
Am I searching for proof that I can still feel pain? Am I reading these books as a sort of pulse-check, grasping for visceral reactions and emotions to stir within me?
I will tell you I felt none. I felt as though this were a nicely packaged facts and recounting memoir. I felt the author had a bit of an agenda on the side of infant-loss awareness and sensitivity. None of this is wrong or offensive.
The story I read in these pages was sterile and clean. I kept thinking that this isn't the horror I know. Where is the raw, heartbreaking emotion?
I fear I am truly numb and desensitized to everything.
I held a baby in my arms that died hours after I birthed her.
The next day, I did it again with her brother.
I can feel no more. I live horror and terror. I am a stone, unmoved.
April 6, 2008
I checked this book out from the library after my niece was born with Hypoplastic Left Heart Syndrome (HLHS). It is the same heart defect that little Gabriel has.
My SIL found out at her 20 week ultrasound that baby Grace had HLHS and went through many of the same worries/concerns/fears that the author had. Gabriel's parents chose comfort care for their beautiful baby boy and their reasons are noble. My sweet niece is currently on the heart transplant list.
HLHS is the most serious of congenital heart defects and it is fatal. Being thrust into this "world" is a difficult thing and I'm on the "outside" looking in.
That being said, this book gave me a measure of comfort and healing. I highly recommend it.
My SIL found out at her 20 week ultrasound that baby Grace had HLHS and went through many of the same worries/concerns/fears that the author had. Gabriel's parents chose comfort care for their beautiful baby boy and their reasons are noble. My sweet niece is currently on the heart transplant list.
HLHS is the most serious of congenital heart defects and it is fatal. Being thrust into this "world" is a difficult thing and I'm on the "outside" looking in.
That being said, this book gave me a measure of comfort and healing. I highly recommend it.
January 19, 2012
This is an amazing story of a parents journey through grief. Their fetus is diagnosed with an anomalie that renders him, "not compatible with life". This family is faced with horrible choices, none of which will change Gabriel's outcome. Although the choice they make, allows them to meet their adorable son just to have to say goodbye. This book was a very tear filled story with a lot of lessons to be learned from this brave, heroic mother fighting for what she knows is right. My hear truly goes out to you and I will always remember you and Gabriel! I was even lucky enough to meet you and hear you speak about Gabriel!! All my honor!
August 3, 2012
Given the prenatal diagnosis of hypoplastic left heart syndrome 6 months into their pregnancy, Amy and her husband are faced with 3 choices: subject their baby to serious, high-risk surgeries after birth to try to correct his fatal heart condition, wait for an infant heart to become available as a transplant or give comfort care. After much study, deliberation, inquiry, research, consultation and investigation, they opted for comfort care. They were fully supported by their families and friends. Amy describes the many creative and beautiful ways they decided to celebrate his life, however short it was to be. Heartbreaking, heart wrenching and heartwarming.
September 5, 2009
I can not count how many times I said to myself, "Amen!" "Exactly!" "Me, too!" as I read this account. Weston's not even born yet, but there are just too many parallels in my pregnancy and experience and the author's to not be so grateful for this book. Anybody experiencing infant loss, having experienced it, or who wishes to understand better and help loved ones experiencing infant loss should read this book!
March 9, 2008
a very heart-wrenching story of a pregnant woman who learns at her 20 week ultrasound that her baby will die after is is born, the family's decisions, outcomes, the feelings they experienced, and comments received from others.
April 5, 2013
An amazing book! So touching, honest and helpful. My dear friend and godchild read this while waiting for their baby who has many significant medical problems. They found this very helpful and I was grateful to read it to understand better what they are going through.
March 31, 2008
I cried and cried.
April 29, 2008
Every nurse should read this story.
October 26, 2009
A book truly full of LOVE. Have the tissues near.
Displaying 1 - 30 of 37 reviews