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Rating: 
Summary: A wonderful story of a faith, family and a mother's love
Review: Amy Kuebelbeck writes with grace and insight about the issues surrounding her son's diagnosis and subsequent death. It is a beautifully written story. My mom is a NICU nurse and has often talked about the agony of watching little babies suffer. She has spoken of letting babies die peacefully as the right thing to do in some circumstances. I always thought it was easy for her to say, not being a parent of those precious babies. I know of a couple who opted to take the surgical route when their baby was diagnosed with a heart defect, only to lose her three months later. This book shows a side to the story that is rarely heard. I really appreciate the sensitive and life affirming approach this book takes. I am reminded of Jesus's response when asked why the man was born blind. Was it a result of his parent's sin or his own sin? Jesus said it was done that the glory of God might be revealed. He didn't imply that God had made the man blind, but that through his experience, God was going to be revealed. Likewise, Amy Kuebelbeck never blames God for her son's malformed heart. I think you will see, through reading her account, that God's glory was revealed in many ways.
Rating: 
Summary: Life-Affirming and Compassionate
Review: Beautifully-written memoir about preparing for the birth and death of an infant. Amy Kuebelbeck 's story of how she and her husband set out to give their son Gabriel, who suffered from a severe congenital heart defect, a good, albeit brief life, is ultimately life-affirming and hope-filled. Their guiding principle as they made decisions for their son's care was that his life be free of pain and filled with love. Amy writes movingly of the difficult decision to forego medical intervention in favor of "comfort care" which would keep the baby comfortable until death came naturally. She tells of the "strange twilight of grief" they lived in while waiting for Gabriel to be born. The story of Gabriel's birth and his few hours of life surrounded by loving family, is a testament to the power of love. The author is very compassionate and respectful of those parents who decide to opt for surgery). But she is confident that she and her husband made the right choice for Gabriel.
Rating: 
Summary: An obsession with the worst possible outcomes
Review: Because I am a mom to a child who has been through the three surgeries that Mrs Kuebelbeck describes, I knew that I needed to give myself time to read this book -- long after my knee-jerk reactions about things I'd heard from other heartmoms. So, finally, long after its release -- just last week, I read "Waiting with Gabriel". I wondered at times, if the universe Kuebelbeck described was really the same as the one I live in. Why, I wondered, would someone grasp at the worst possible outcomes when in fact, there are so very many good outcomes? Hmmm, 1999 is when Gabriel lived and died -- perhaps the Kuebelbeck's did not have access to the info that I did in 2001, when we received our in utero diagnosis of HRHS (initially dxed as HLHS). But even with that possible explanation, the fact is, I believe the Kuebelbeck's chose to find the negative at every turn based on what I read in the book. This was apparent not so much in the info presented in the book, but in the kind of analysis and esp the attitude taken toward kids with hlhs. Here are some examples: Kuebelbeck offers a litany of the various medical/developmental problems that can come with hlhs, some of which include; the need for tube feedings ("almost universal", she says), no contact sports allowed, poor circulation, and speech development issues. The problem is that some of the issues Kuebelbeck lists are temporary -- or are not necessarily deep quality of life issues. For example, some kids with hlhs (and other heart problems, too) will need an ng tube -- but not forever. My child came home without an ng tube, and I know of many children with hlhs who never needed an ng tube beyond their first hospital stay. Contact sports? Well, maybe not - but not every child can play contact sports -- is that really enough to say their lives aren't worth living? Kuebelbeck talks about visiting a family who had an infant with hlhs, and how the baby was blue and exhausted after crawling around the floor for a few minutes. Perhaps that baby had only had the Norwood and was ready for the next surgery, the Glenn -- see, it is this type of omission that concerns me -- since that baby may have "looked" much better after the next surgery. Kuebelbeck seems to have labeled that child as having a life not worth living. Again, unfair -- perhaps she should have visited a child post-fontan to make a more well-rounded assessment. There were several instances when Kuebelbeck quoted drs and nurses as saying that if in her shoes, they would not pursue treatment. One nurse congratulated her for not putting Gabriel through the "torture" of the surgeries. Well, I have to wonder how that nurse, in good conscience continues to work in a unit where she feels children are being tortured. I can say that I sat with my daughter through recovery for three open heart surgeries - and while there were distinct moments of discomfort -- there was nothing that I could even remotely describe as torturous. I was there -- I saw it. I would hate for any parents considering surgery to believe that their child would experience "unimaginable" pain, as Kuebelbeck describes it. In our surgical unit, there was a nurse there who had herself been through the fontan, and is devoted to the care of cardiac kids. I don't believe she feels that the children are going through torture. There is a 19 yr old young woman with HLHS who is currently studying at college so that she can enter med school to be a pediatric cardiac nurse. I don't believe she formulates her future as wanting to help torture young children by putting them through heart surgeries. As a Catholic, I was disturbed by the license to do nothing, but I won't criticize the priest involved, since I can't know what information he had or didn't have. I can only say that I hope when he baptizes and confirms children and young folks in his parish who have hlhs and other heart defects that require the very same "torturous" surgeries, that he doesn't believe they have lives that are not worth living. Clearly Gabriel had a lethal case of hlhs -- he did not even live long enough for the interventions that save so many other children. I cried through the rest of the book, particularly when Kuebelbeck describes the day of Gabriel's birth and the time of grief after his death. I so wish that Kuebelbeck would have focused more on these aspects -- those of cherishing Gabriel's life -- instead of trashing the lives of other children with hlhs. I did, however, appreciate her "pro-life" approach to carrying Gabriel.
Rating:
Summary: A true loving story about a fatal heart defect
Review: 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.
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Summary: What a journey
Review: First off, I am a mother of a child born with muliple congenital heart defects. My sons heart defects were not seen until after his birth and I am so grateful for that. Had I known while pregnant, I am not sure he would be alive.ont get me wrong, the journey with my son was worth it, but had I been warned, I may not have chosen to continue pregnancy. I am so glad I never had to make that choice.
Hypoplastic Left Heart Syndrome. No matter what any persons opinion is, Amy makes a valid point. No one can contruct a whole heart out of a half of a heart. I tend to disagree with the comments made about torturing these children. I bet if you asked the surviving teens/adults they would not describe the surgeries as torture. I also think that I would never ever be able to have a child and NOT do anything to at least offer that child a chance at life.
That said I know that this may upset many, but I think the book sent mixed messages. It definately does not offer much hope for HLHS, yet the book really is not about HLHS...It is about a familys loss of a child. It is easy to not be a writer and criticize the book! But the book in my opinion crosses the line from compassionate care, to scaring the hell out of someone choosing to try the surgical treatment. Years ago HLHS was as much of a death sentence as anacephely. Not anymore. It would have been a bit more fair to show that there are successes too. For the doctor who has made comments I really do not think your opinion counts as many pediatricans are still of the belief that HLHS is incompatable with life, and aside from that you have absolutely no idea what it feels like to be a parent of a child born with heart defects. Your 5 minutes per week does not make you an expert of what it feels like trying to cope with a critically ill baby.
Bottom line? The book was (in my opinion) not intended to be about HLHS. It was about losing a child, and choosing compassionate care. I thank God I never had to make that choice. Would I recommend it? To someone who had lost a child, yes. Not to someone debating compassionate care. It does send mixed messages, however I do think that Amy and her husband deeply loved there son.
Rating:
Summary: Tender Journey of Compassionate Care
Review: I am so thankful that Amy Kuebelbeck was willing to share her grief and most private moments so that the world could know the beauty and value of her son Gabriel's life. It was clear to me in her writing that there is no universally "right" choice for parents faced with a prenatal diagnosis of HLHS. If there were, doctors would not be giving parents options. Each family has to make their own decision out of love for their own baby. Without a doubt, this family loved Gabriel so much that they spent months researching what would be best for him. It was not a decision they took lightly and they were not uninformed. While other families may make other choices that are equally based on love, this book shares the journey of compassionate care. The book provides a window for others to see how a family cherished and loved their child in a way that is different from the dramatic medical interventions we are so accustomed to seeing on TV. Waiting With Gabriel is a tender, pure, and achingly honest glimpse of a family determined to give their precious baby a life surrounded by love.
Rating:
Summary: Your wonderful gift of love for your son Gabriel
Review: 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.
Rating:
Summary: Your wonderful gift of love for your son Gabriel
Review: 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.
Rating:
Summary: A Father's review
Review: 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.
Rating:
Summary: A balanced, caring story
Review: This profound memoir detailing the author's thorough investigation into HLHS will not only strike a cord in the hearts of readers, but more importantly will share valuable information needed for those struggling in their decisions regarding the medical, emotional and spiritual well-being of their children. Kuebelbeck's research helped the couple to make the right decision for their baby, as proved by their medical specialist's finding their baby had one of the most severe cases of HLHS, and would have suffered needlessly. Truly an informative, yet passionate read.
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