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.

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!