Customer Reviews

Waiting with Gabriel: A Story of Cherishing a Baby's Brief Life

5 star:		(38)
4 star:		(1)
3 star:		(2)
2 star:		(0)
1 star:		(6)

 

 

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.

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.

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!

BEING A MOM OF A CHILD BORN WITH HLHS, THIS BOOK WAS A TRUE TO LIFE JOURNEY OF HOW THIS DEVISTATING FATAL HEART DEFECT CAN EFFECT THE FAMILY.

CONSIDERING I AM A "HEART MOM" AND HAVE KNOWLEDGE ABOUT STATISTICS, OUTCOMES ETC, HLHS IS A FATAL DEFECT; IT IS NOT COMPATIABLE WITH LIFE. THERE IS NO CURE FOR HLHS; THE SURGERIES ARE NOTHING BUT A TEMPORARY FIX. THE END RESULT IS DEATH. THIS IS A VERY PERSONAL DECISION THAT THE FAMILY IS FACED WITH WHEN AN HLHS DAIAGNOSIS IS GIVEN AND THE OPTION THEY CHOOSE FOR THIER CHILD IS WHAT THEY FELT AS THOUGH WAS THE BEST DECISION FOR THEIR CHILD. PLEASE DO NOT COMPARE OTHER CHD'S TO HLHS, HLHS IS NOTHING COMPARED TO OTHER CHD'S. OTHER (MOST)CHD'S CAN BE REPAIRED, HLHS CANNOT BE.

IT IS DIFFICULT FOR ME TO READ OTHER REVIEWS ABOUT THIS BOOK- BECAUSE IT HAS BECOME NOTHING BUT A "MATCH" ABOUT WHETHER PEOPLE THINK AMY AND HER FAMILY DID THE RIGHT THING AND THAT AMY DIDNT PROVIDE THE PROPER STATISTICS ETC. MEDICAL PROFESSIONALS DON'T EVEN HAVE ACCURATE STATISTICS, HOW CAN READERS EXPECT FOR AMY TO PROVIDE THAT IN HER BOOK?? THIS BOOK IS NOT ABOUT STATISTICS, OR WHETHER HER FAMILY DID THE RIGHT THINGS OR NOT, IT IS ABOUT A FAMILY WHO RECEIVED THE WORST NEWS A FAMILY COULD EVER RECEIVE-THEIR BABY HAD A LIFE THREATENING HEART DEFECT AND WAS GOING TO DIE-SURGERIES OR NO SURGERIES. IT IS ABOUT THEM DOING WHAT THEY FELT AS THOUGH WAS THE BEST DECISION FOR THEIR SON FROM THE OPTIONS THAT WERE GIVEN TO THEM. IT IS ABOUT THEIR JOURNEY WITH THEIR SON, AND ENSURING HE LIVED AND DIED WITH NOTHING BUT LOVE AND DIGNITY.

PEOPLE WHO CRITICIZE WHAT AMY AND HER FAMILY CHOSE FOR THEIR SWEET GABRIEL SHOULD ACTUALLY SIT AND ASK THEMSELVES THIS. IF AMY AND HER FAMILY CHOSE TO MEDICALLY INTERVENE, WOULD THEY HAVE DONE THAT FOR THEIR BABY, OR WOULD THEY HAVE BEEN DOING IT FOR THEMSELVES??? HLHS IS ABOUT THE BABY, NOT THE PARENTS

IN CLOSING, THIS IS AN EXCELLENT BOOK AND TRUE TO THE FATALITY OF HLHS AND ITS EFFECTS ON A FAMILY.

This is a beautiful book. Yes, it is heartbreaking and deeply emotional. Yet through the emotional pain and sadness there is
a feeling of Love so powerful that you can almost feel it draw up to you from the pages.

I imagine that most who read this book will be parents who have either suffered the devastating loss of an infant or are about to. This is also a book for their friends and family. If you have someone dear to you who has lost an infant, or will, please read this book. Even if the parents are only aquaintances...a neighbor down the street, a co-worker you only know in passing, someone you see at church...please read this book.

Amy has written a beautiful book about Gabriel,it is a book for parents everywhere, and as I said - even though it is about an aching loss, it is also about Love.

It has been a tradition for years to focus on the mother after the loss of her child. It is not very often that a story about a couple is published. Not only did I cry, smile, and wonder about everything in this woderful book, I kept thinking...what a strong couple. I was pleased to read that Amy also included her husbands feelings in this book. This is a must read for anyone who has lost a child. Thank you Amy for relieveing some of my pain.

This book is lovely - a story that on one level is heartbreakingly sad, but also uplifting and full of grace. The author is a truly gifted storyteller. My favorite parts are when she describes events that have made her truly feel her son's presence is still with her. Wonderful, wonderful, wonderful.

In reading other's reviews of this book, it's clear that other parent's of children with HLHS feel that Amy Kuebelbeck is somehow doing a disservice by suggesting that comfort care may be the right decision for some families with children who have HLHS. Ultimately, each family has to do what is right for them. But facts be told, after 17 years in the field of pediatric cardiology, it is clear to me that the 3 stage procedure ending in a Fontan does NOT give a good, long-term outcome. The majority of the children with this surgery do well until their teen years (this is why the other reviewers with children in their school age year feel the surgery is such a success). What they fill eventually find out is that most patients with a Fontan go into heart failure approximately 10-15 years after the procedure is performed. Some undergo another surgery to revise their hearts once again; some undergo heart transplant, most children get progressively more incapacitated and ultimately die in their late teens or early 20's. If this is what you consider to be a great outcome, the surgical approach is certainly an option for you. But if were given the same choice as Ms. Kuebelbeck and her family during any of my pregnancies, I would have chosen the exact same path that she did, because I've seen the tragedy these families experience first-hand.

I think this book should be offered to anyone who is carrying a child with HLHS; by offering them a great example of the option of comfort care, it at the very least allows them a chance to decide whether this is the best option for their family, without sugar-coating the reality of the situation.

Waiting With Gabriel: A Story Of Cherishing A Baby's Brief Life is the heart-wrenching testimony of Amy Kuebelbeck, a mother faced with a difficult and terrible choice. When Amy learned that her unborn child had a fatal heart condition, she and her husband were faced with the choice of letting their baby die naturally, or striving with every expense to give their infant a chance at life. Their journey of personal tragedy, enduring loss, and accepting grief is a moving and unforgettable testimony. Waiting With Gabriel is sensitive and recommended reading.

I read this story only a few weeks after losing my own newborn daughter to a severe heart defect. I was amazed at the many similarities between my experience and the author's. I guess it was helpful to know that someone else has experienced this pain and has survived it. The story of Gabriel will always be close to my heart.