Immortal Bird: A Family Memoir [Hardcover]

This book is going to haunt me for a very long time. It brought out the grief and anger in me, and even some guilt for being so angry at the father in the end.

Doron Weber is a gifted writer. This memoir of his older son's final three years is passionately described in this book. His redheaded and bright son Damon is born with a missing left heart ventricle, which causes both kidneys and liver to overcompensate for the lack of oxygen, creating more problems for the unfortunate soul as he develops into a teen. The majority of people born with this condition do not live to see adulthood, despite all the advances in cardiological medicine. Despite various corrective surgeries and ultimately a heart transplant, nothing can save Damon. A rather common infection for heart transplant recipients takes his life in the end.

This book is replete with both paternal love for his child and parental rage at the medical bureaucracy that helped kill off the boy. I myself went from love and fear to shock and anger myself, but perhaps not always directed at the people the author wanted.

And it is this rage that bothers me from the start. Weber repeatedly talks lovingly about his son. No doubt he is a gifted Shakespearian actor blooming in his prime. He is affectionate and kind to his younger siblings. He is handsome (I saw Damon's photograph in the New York Times). He is charming. He is a young man in his teens. The disturbing thing for me is that Weber repeatedly also reveals his arrogance and his violent temper. He demands perfection from others despite his own imperfections. He disparages others. He lives a lifestyle few can emulate and he demands to be waited on 24/7.

It's as if he expects the best treatment just because of who he his.

Weber's rage results in name-dropping all throughout the book. This is especially disturbing as it comes across as him wanting to humiliate all who treated Damon. Why? He already had some of the best in the country treating his son, something that most people with Damon's affliction can't afford, and these doctors had other serious patients to treat. He mentions every doctor who ever treated Damon by name and duty position, adding his own opinions of them as well. His opinions are not very positive in most cases. He is especially mean toward every female doctor who treats his son in any way.

Weber is a talented writer, no doubt, but he is not a scientist nor a doctor, even if he does claim to have "written a couple of medical books, I work with top scientists and researchers, and I'm relentless in my digging" (54). He obviously doesn't know everything. He learns of medical conditions he's never heard of before and then gets enraged when doctors don't forewarn him of them. Even his doctor friends ultimately can't save Damon.

And yet I have no doubt Weber was a devoted father who wanted the best for his son. He went through hell those last three years of Damon's life, and so did his wife and other two children. Everyone suffered. The marriage was stressed. Damon's health affected the entire family. But Damon is special because he is the first child and older son.

This book also reads as both a loving memoriam for Damon as well as a documented, chronological account of his lawsuit against the hospital that ultimately treats Damon for his heart transplant. He is a grieving father who gave everything he could for his son, and in his loss he is unconsolable. He lashes out at everything and everyone. His early arrogance makes it difficult for me to truly feel for the father when he is at his worst right before his young son passes on. The detailed final hours of Damon's life are so harrowingly detailed that one can feel being in that room with Damon as he passes on; one wants to hope for that final miracle that saves this teen. But that never comes.

I felt a lot of the same feelings when my own father died from a stroke due to his heart murmur. Reading the final chapters brings all that grief and sorrow back.

So I am torn. The first half of this book is too self-laudatory but the second half of the book is full of medical mistakes (some are exaggerated for effect, I'm sure) and reading of Damon's slow demise is heartwrenching. The final two chapters brought me to tears; I wanted him to live. Here is a boy who never knew what being healthy means. He took his medicines like a champ. He is smart, talented and loving. He could have truly been a great actor, scientist or lawyer had he been blessed with a healthy heart from birth.

I really wish Weber had had this book edited more thoroughly. What what his intent with writing this book? Was it to feel grief for losing such an awesome young son, or was it to get people enraged at the medical establishment found everywhere, even at Columbia Presbyterian Hospital. A reader will feel both love and horror after finishing this book, but it would have been much more effective had he only focused on one emotion. Weber even admits that he had sent an early edition of his book to a "dear college friend, the critic and editor Bob Tashman [who was also Salman Rushdie's editor], who was dying at the same time from pancreatic cancer." This man allegedly "had some issues with this book" but died [in June 2007, just a bit over two years after Damon died] before he could enumerate them (356). If only Tashman had lived long enough to have worked magic on this book.

I found myself heartily disliking the author when only a few chapters into the book - his misogyny,arrogance, pride, and sense of entitlement made this a book I waded through, rather than enjoyed. The son is described in such glowing overdone terms that he's completely unrealistic as a human being, and stays a sort of cardboard cutout of the perfect kid, and the author name-drops shamelessly and continually.
Mr. Weber seemed to expect doctors to be at his beck-and-call 24 hours a day, and was outraged when the cardiac surgeon wouldn't provide her home phone number. (I could empathise with any doctor who didn't want to give the author access.)Not recommended.

I read this book in a wave, unable to put it down. Doron Weber's tribute to his son Damon, born with a heart defect that leads to a serious complication in his teen years and eventually to a heart transplant, is overwhelming in its detail, emotion, sorrow and theme. The main message that I was left with from this read is NEVER, NEVER, NEVER trust that doctors are competant. Even if you have connections, resources and knowledge, which the author had all of, that doesn't let you relax. The events leading up to the sad ending of this book were amazing in that they were so blatent and banal. The doctors on a top transplant team seemed to care little about the most basic areas of aftercare or beforecare of their surgical patient, the ICU staff was hit or miss and the most basic checks and balances were not followed. I think I will be changed by this reading. I've always had a little reluctance to thinking that doctors might just be making mistakes, and might let their own laziness or love of glory at times overrule doing what is best for their charges, but I will no longer have that. Not all doctors let Damon down, but a crucial set did, and although the book doesn't tell the end result of a lawsuit that might still be pending, I hope they were truly punished for what they did.

Besides the medical theme, I loved reading the details of life with Damon. He sounds like an amazing kid, as almost all teens are. They all have potential that can lead them to do things that will be noticed by the world, but very few of them get recognized the way that Weber recognizes his son here. I think he did Damon credit, and that any reader will remember him.

If you have a child with any medical issues, I'd call this a highly important read. Read it, and let it guide you in advocating for your child. I hope it will inspire me to do a better job of that.

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