Immortal Bird

by Doron Weber

A stirring, gorgeously written memoir of a father's struggle to protect his son - a model student and gifted actor - from a rare heart condition that threatens his life.

Damon Weber is a brilliant kid - a skilled actor and a natural leader at school. Born with a congenital heart defect that required surgery when he was a baby, Damon’s spirit and independence have always been a source of pride to his parents, who vigilantly look for any signs of danger.

Unbowed by frequent medical checkups, Damon proves to be a talent on stage, appears in David Milch's HBO series Deadwood, and maintains an active social life, whenever he has the energy. But running through Damon's coming-of-age in the shadow of affliction is another story: Doron's relentless search for answers about his son’s condition in a race against time.

Immortal Bird is a searing account of a father's struggle to save his remarkable son: a moving story of a young boy's passion for life, a family's love, the perils of modern medicine, and the redemptive power of art in the face of the unthinkable.

Genres: Memoir, Nonfiction, Biography, Health, Biography Memoir, Medicine, Adult

351 pages, Hardcover

First published February 7, 2012

Reviews

[Rene · Rating 3 out of 5]

*Disclaimer* I have a 5 year old daughter with multiple congenital heart defects who has had two surgeries, with more waiting in the wings, and is currently in heart failure. I'm sure this colors my perspective and my review.

I keep vascillating between 3 and 4 stars, because while I see some significant downfalls to this book, I also see some really, really important lessons in this book that are aimed at *everyone*.


First, the biggest challenge to reading this book, for me, was the perspective through which we see Damon. Damon is told through the retrospective devastation of his father. Therefore, it is hard to see through to the fully human person that Damon was; here, he has been enshrined as the "best" "the most perfect" one on whom all accolades were bestowed. In the epilogue, Daron makes a comment along the lines of "Rare is the mother who loves a child like [his wife] loved Damon". Of course, we as readers know this is not true. I'm sure his wife loves her other two children as much as she loved (and still loves) Damon, just like all of us reading this book deeply love our children. The book is full of equivalent statements about Damon and family, and they can be frustrating and disconnecting to read unless you consciously remind yourself that you are reading the words of a man still mourning his son, and writing about him through the lens of that loss, and the hyperbole is his way of struggling to explain how deep, and profound of a loss it is not only to his family, but to the world at large. I felt like there were dimensions here that weren't touched, and a picture of Damon that was only half-painted.

Damon's father is clearly well-connected, highly affluent New Yorker, as evidenced by all the vacations they take, activities they're involved in, and the high profile name dropping that is a frequent occurrence in the book. It can come across as arrogant and "narcissistic", but I'm not in any way convinced that is the case; rather, I see the name dropping as an attempt to make people notice.....really notice and consider this not just another story, but something "important", for Damon's life to have been meaningful and to have mattered.

And where I think Damon's story has something to teach us all is in the last half of the book, when it comes down to the selection of Damon's heart transplant hospital and his subsequent care as things go downhill: it is vital, absolutely imperative and vital, that people understand how hospitals work and how to be able to medically advocate when things go downhill. We don't know what we don't know, and what you don't know can and does kill people, every day. Unfortunately, most of us only learn these skills when it's too late, and we learn them the hard way (and in my daughter's case, I've learned the hard way).

This doesn't just apply to those with critically or chronically sick children, this applies to even the most healthy. While I don't think someone has to wrap their lives up in planning for doomsday scenarios, taking a few brief moments to understand what you might need to know if someone in your family (or yourself) gets sick can literally be the difference between life and death and takes only a few moments of time. The James's project does medical advocacy for infants, and the founder has a great blog post titled "Monsters under my hospital bed" that briefly mentions the most important information you will want to have on hand in case of an emergency hospitalization http://jamessproject.com/blog/save-y.....

This is my "world" so to speak. Congenital heart disease is the #1 birth defect. It kills five times as many children every year as all forms of pediatric cancer combined. Every year, 10% of children born with a CHD won't live to see their first birthday. Every year, between 4-8,000 children die because of their heart defect. Damon joins a very long list of children who have lost the battle, and it's a loss that should sadden us all.

[Jim Jagielski · Rating 1 out of 5]

Immortal Bird - Review.

How does one go about reviewing as personal and as tragic book as "Immortal Bird", written by a grieving father about his young son? How does one justify ratings on a memoir of a young man who died too young, and just as things looked the most hopeful? Does such a poignant theme "require" 5 stars, as if giving any less would in some way minimize the tragedy of the events. Or would one cast their rating based on the impact of the book, in which case I would also have to give it a 5 (I have never felt so driven to review a book). But neither one satisfies, neither one, at least to me, goes to the heart of a review. No, the honest review and rating must be based on how effective the author was in telling the tale. Did the author meet his goal? And here, unfortunately, we find failings.

Immortal Bird could have been many things: a judgement against a broken medical system; a father's fight for his son; a joyous celebration of a young life and the precious extra years given to him by caring doctors and parents. It could have been all this as more. But at its core, it is, or should have been, a memoir, even the sub-title indicates that. But we never see it as such.

Damon Weber was born with a fatal congenital heart defect. At age 4 he underwent surgery for the Fontan procedure, a palliative corrective surgery designed to bypass the defect. Immortal Bird is the story of Damon and his health, the triumphs and tragedies, but mostly it is a story of his father (and author) Doron's involvement in his son's life.

We get only fleeting glimpses of the real Damon, instead we see Damon through his father's eyes. Naturally, of course, especially being still raw from his son's death, Doron's characterization of Damon is a little too perfect. We don't see a young boy living and struggling, instead we are told about him, from a point of view which expects and demands we see Damon not as a flesh-and-blood person, but as someone better than all of us. Damon, unfortunately, is never real for us; he is a caricature, a cardboard-cutout of the perfect person. And so when Damon tragically dies after being so close to achieving a "cure", we are saddened by the loss of so young a life, but that crucial emotional investment in Damon the person isn't there, unforgivably diminishing the impact of this young man's struggle.

But is it just Doron's unrealistic and almost angelic portrayal of Damon that does this? The answer here must be No, it's not. The biggest stumbling block to knowing Damon, getting close to Damon, feeling for Damon, is Doron himself.

Doron comes off badly; very badly. He is affluent and privileged, as well as arrogant. Now this is a tricky area, to be sure. He is, after all, fighting for his son's life, and so in pressuring people to ensure the best for Damon, Doron acts as any loving father would. But Doron never looks at himself; he never casts that truthful eye internally and admits, or even acknowledges this fact, which is painfully obvious to the reader. He constantly name-drops, he goes to great pains to let the reader know how many doctors, actors and other "famous" people he knows. He and his family are constantly traveling, enjoying the perks of status. And yet he never admits that this privileged status has likely allowed Damon to live as long as he had, nor that such access to specialists is a luxury that very, very few can claim.

His world revolves around Damon. In other people, such single-mindedness and focus would be admirable; in Doron, it's oppressive and dismissive. He never appears truly appreciative to anyone, but especially anyone within the medical establishment, who he interacts with. Even the heart donor and his family don't even merit a perfunctory note of gratitude. He berates people, wishing to "cut them down" a peg or two, while not seeing that he himself is being hypocritical. When he derides the arrogance and hubris of doctors, he fails to note the irony and hypocracy of the situation, which is readibly apparent to the reader. His "threat" to "expose" Dr. Fontan ( the doctor who devised the procedure), for no other reason that his procedure was not a full and complete cure (which it never claimed to be), is just one of many, many examples in the book.

And there are so many: allowing Damon and his friends to review Rhodes Scholar applications and then sitting idly by as they ridicule the applicants and their pictures; yelling at hospital staff so loudly that Damon himself leaves his hospital bed to "protect" his Dad; using and then throwing people away once their usefulness is gone; and criticizing 2 rabbis because they dared to infer that they were better judges of the criteria for a Bar Mitzvah than he. Even his wife and 2 other children hardly register as participants in his life.

But the worst is towards the end of the book. Damon struggles at the end and at one point gallantly rallies; close to his death, by sheer force of will, he manages, for a short time, to increase his blood pressure and reverse his downward spiral. But instead of this being the heroic effort of Damon, Doron makes himself the hero: Damon rallies for *him*. Damon does this to show Doron just what a great dad he is. It is Doron's presence alone which gives Damon the will to live. Damon's effort is simply a validation of Doron and all he's done for his son. The triumph is not Damon's, it's Doron's. Unforgivable.

So Immortal Bird is not so much a story of Damon, but rather an effort by Doron Weber to convince the world, and himself, that he did all he could for his son. That others may have let Damon down, but that he never did. That Damon was a great son, and that he, Doron, was a great dad. That the entire ordeal results in the Weber's filing a lawsuit surprises no one, but even then, if done to expose medical failures one could understand. Instead, the reader simply knows it's so Doron can obtain his pound of flesh.

When you dislike the story teller so much, you can't help but dislike the story. Despite the obvious pain and grief you know that Doron is feeling, you can't get past just how obnoxious he is. You want to know about this nice, talented boy named Damon, but all you really get is a look at Doron, someone that you really don't want to know. Damon's life and his story deserved so much more.

[Kathy · Rating 2 out of 5]

This is a sobering look at what can go wrong when patients' families clash with a powerful medical system. It's the story of adults behaving badly and a child suffering because of it.
This book disturbed me greatly, not only because of the actions of some in the medical profession which were reprehensible; but because of the actions of Damon's own father. Weber was constantly dropping names and expecting preferential treatment ("My friend and mentor Art Singer offers to call up Nobelist Eric Kandel, a Columbia star, and have him put in a word for Damon"). Weber frequently demanded that doctors who happened to be a "friend of a friend's" drop in on Damon's hospital room, even though these doctors were not involved in Damon's case and could offer no help. Weber frequently got into shouting matches with doctors within Damon's earshot, once causing his naked son to rise from his intensive care bed and come to the defense of his father.
What disturbed me the most was Weber's callous indifference to the heart donor and his/her family. Weber states in one section "I once upset Damon by joking we had to wait for the right person to croak before he could get his new heart." Even after Damon received the heart transplant Weber never acknowledged one thought of gratitude towards the donor and/or the donor's family. Never once did he give a thought to the life of the donor! Not one perfunctory "thank you." I can understand why he may not have later when Damon wasn't doing well, but immediately post transplant Damon was doing well. Seems like many fathers of a young transplant recipient would have given some thought or thanks to the donor's family. Weber refers to the donor heart as a creature and a thing; he calls it a marvel of human engineering. He does not refer to it as an organ that came from a recently deceased person who had the selfless courage to donate his organs. Throughout the book Weber demonstrated an astonshing inflated sense of entitlement!
But I do agree that "even when the doctors and nurses are first rate, as scores are, the system often conspires against them. And when they are less than first-rate, as far too many turn out to be, they can pose a threat to the patient, which must be defended against at all times." I truly believe that Weber went about defending against incompetence in all the wrong ways. It's so sad to read of the suffering his son and family endured. This was just a sad, senseless story on so many levels.

[Nette · Rating 2 out of 5]

Well, yikes. This is a terribly sad book about the illness and death of child, but it's written like the longest, most annoying Christmas newsletter you've ever received. "I know David Milch, so my son got a plum role on Deadwood! "Here's us vacationing every summer in Scotland!" "Here's Damon meeting Al Pacino!" "My son and his friends spent a Saturday helping me process Rhodes scholarship applications! Ha ha, they enjoyed making fun of the pictures!" (That one really burned me.) More annoying is the constant railing against the doctors and hospitals who "let his son down." This family, rich and well-connected, was able to pick and choose their doctors and hospitals but nothing was ever good enough. Their poor kid had an illness that's usually fatal, the medical system spent 16 years keeping him alive, but -- no surprise -- the book ends not with the awful death but with the filing of a lawsuit.

[LeAnn · Rating 1 out of 5]

I received the book for free through Goodreads First Reads.

Immortal Bird is the story of how NOT to get help from others.

I did not find the father endearing. I felt sympathy for his son but found the father off-putting and narcissistic. Perhaps the doctors and medical providers were wrong, but the way the father went about "getting help" did not make me feel sympathy for him. I didn't particularly care for the writing or the name-dropping towards the end. I didn't enjoy this book or the feeling it evoked.

[Angela · Rating 2 out of 5]

Because I needed another reason to hate hospitals and doctors. This father devoted his life to making sure the doctors were doing what they needed to do, and he had the money and connections to make these things happen (for the most part), and still lost his son due to negligence. Which begs the question, how many people have died because their families haven't had the money or connections or intelligence or time this father had? The thing that stood out most strongly for me in this book was that breakdown of the healthcare systems we're encouraged to trust.
But as such...most of the rest of the book seemed superfluous. There were a few beautiful scenes with Damon, and I'm glad to have read them (especially Damon risking being seen by his friends to cuddle with his dad in the snow), but I struggled through this book until just before the heart transplant. I realize the importance of getting to know Damon in order to make us realize just how unjust his death is, but I still think some judicious cuts could have been made for publication. I can see how all of this would have been necessary to the dad--clearly this book was cathartic and part of the healing process for him--but I agree with other reviewers that this almost would be a better book to keep among the family, and a version submitted for publication should have been much more concise.
Man, sometimes being honest with my reviews makes me feel like a bad person.

[Laura · Rating 1 out of 5]

I just couldn't finish this: what I'd hoped would be about this family's incredible loss has turned into being more about this father's anger (and eidetic memory for anything and everything about his son). This isn't to diminish the pain of losing one's son, or the life he led (and might have led had he lived) but, well, the son didn't come through as the hero of this as much as the father does. Here's an example: there's about four pages of a conversation, remembered verbatim, the author has with the doctor who did Damon's Fonton surgery, which is equal to the number of pages spent describing Damon's bar mitzvah. And another: the discussion of where the heart transplant should take place is more detailed than Damon's directing the school play.

When I was a pre-teen/early teen, I read books like Sunshine and Death Be Not Proud and The Bird's Christmas Carol and The Other Side of the Mountain (and watched all the tv movies), as did many of my friends. So that's the level of pathos I expected in Immortal Bird, just as I expected that the book (or the part of it I got through) to be filled with Damon's life. And while Damon seems to have been a very nice, talented teenage boy he wasn't that different from other equally nice, talented teenage boys I've known - heart problems excepted, of course.

ARC provided by publisher.

[Mario · Rating 3 out of 5]

I knew pretty early on that this would be a tough book to review. I know that this book will be popular, I can guarantee it. And, in truth, it is everything it should be; heartwarming, heartbreaking, sad, inspiring, etc. If you haven't already read the book, there's a very good chance that you'll love it, so you should probably just go ahead and read it. I, however, while I am well aware that my reaction is probably highly unusual, did not love it.

I'm just going to go ahead and spoiler the bulk of this now, partly because there will be a few spoilers, but also because I can't possibly review this without broaching sensitive topics in a not-altogether respectful way. So if you don't want to be spoiled or offended, just stop here.

Anyway... isn't it amazing how the children that die are always the best, most amazing children ever? That is the bulk of my problem with this book. You can't get though more than a couple of pages without hearing how extraordinary Damon was, how handsome, how talented, how "responsibility comes naturally to him," how popular he was, and what a great relationship father and son had. I'm not going to say that Weber whitewashed Damon's life, and (obviously I did not know Damon, so I am really not in a position to say) it is entirely possible that Damon was the real perfect, amazing person that everyone else pretends their lost child was. But, to me, it feels like Weber is just too close to the subject. The book feels dishonest.

Of course, most of that could be explained away by the different kind of life that sick children are forced to live. When you have far too little energy to get out of bed most days, it isn't hard to stay out of trouble so you end up looking like a model child regardless of your inclinations. I was sick myself around that same age, so I knew a lot about what he was going through (I saw the entire IVIg episode, for instance, coming a mile away). As a complete side note, I swear the nausea in the fist infusion is a scam of some sort. It is entirely preventable with Benadryl, but they don't give it to you until after you get sick the first time. After that, you don't get any reaction at all. I think they do it on purpose to boost the placebo effect.

But it goes beyond that. For instance, anytime Damon's friend Kyle (a girl, if that matters to you) shows up, Weber makes a point of playing up the romantic possibilities and the idea that she's his "soul mate," even though there is, at no time, any hint of an actual romantic connection between the two. Again, I wasn't there, but it seemed like it was far more likely to be the fantasy of a sad, grieving father than something real. In short, Weber does not strike me as an entirely reliable narrator.

So that was my problem. I feel like I, as a reader, was robbed a little of getting to know the real Damon because he was hidden behind his father's blindness and wishful thinking. Really, this is a story about Weber as a father far more than it is about Damon as a son, but Weber does not seem to appreciate how much of the story is colored by his biased perception.


I also had a minor writing style issue. Whenever danger approached like with the inner tube, horseback riding, or the Mexican hole, I always found myself having to go back and read the last couple of sentences again because I didn't realize there had been any danger at all until it was already being resolved. I don't know if Weber was too sudden or too subtle, but since it happened more than once, I'm not inclined to blame myself.

Again, though, I'm sure that most people will love it, particularly if you have ever had to go through something similar.



I received this free through Goodreads First Reads (thanks!).

[Tracy Towley · Rating 3 out of 5]

This review is probably the most difficult I've ever had to write. Immortal Bird is a father's memoir that details the months leading up to his son's death. What this father went through is beyond my comprehension, and I knew that it would be a deeply emotional book. Unfortunately, I cannot say that the book hit the mark for me.

It's obvious that the author needed to write this book. I found myself constantly imagining him sitting alone in a room, remembering every last detail of his son's disease, and the countless hours he and his wife spent trying to find a way to battle it. I can't begin to imagine how completely devastating the writing of this book was, but it seems it was something the author needed to do in order to make some sense of the tragedy his family endured.

While it isn't terribly written, it really feels like something that would be of great interest only to his family and friends, or perhaps parents who've seen their children go through this particular disease. Overall though, the book was much more about a disease and much less about Damon, the boy who succumbed to it.

It was also a little awkward reading the author constantly trying to convince the reader that his son was the greatest/smartest/bestest ever. Obviously, as a father, you feel that way about your son. And if the book was written differently, I may have thought he was a pretty exceptional kid myself. However, it seemed that every other page was the father telling us how no kid had ever done xyz as well as his kid, and how every person who met him was just completely flabbergasted that such a perfect person could exist. It really made me wish that I could have pushed aside all the father's biased descriptions to really get a glimpse of who Damon was.

I received this book through the Goodreads First Reads program, and I was initially pretty excited about it. As I continued to read though, it became obvious that I was going to have to write a mostly negative review about an incredibly personal book, and in the end I wish I just hadn't read it. Unfortunately I cannot recommend it to anyone, because, for me, it really failed to do what it set out to do.

[Margaret · Rating 3 out of 5]

I heard about this book while listening to Science Friday last week when host Ira Flatow interviewed Doron Weber. Just what I needed, I thought, a story about a vibrant teenager who dies too young, but then at the library the book popped off the shelf, so I took it home. First, I'll say it is a compelling read. Even though every reader knows from the start that young Damon Weber will die from his effects of his illnesses, one keeps reading through each step of the terrible decline of this child. But that is not the only story here. The author, with whom one simply needs to sympathize because of his situation, turns out to be an arrogant man who squeals, not just at the horrors of the loss of his child (who does not sympathize with him there), but that such horrors could happen to him, a man so privileged and important that the world dare not allow anything untoward to happen to him. His son is clearly a gifted and spirited young man, but the father, that is another story. He is clearly full of his own importance, evidenced by his continual name-dropping and his constant attacks on others. As the head of some foundation, he is clearly used to having his enormous ego stroked by various people in the arts and sciences who need his support for their own work. Yes, his son Damon seems to be a fine actor, and I am sure Damon worked hard on his parts in school plays. It is to Damon's credit that he takes on directing a play at school even though he is too ill to be in school all day. And yes he got a part in Deadwood, but that was due to his father's influence and connections, not his own brilliant acting.

The author does challenge the doctors who serve his son, and here one has to agree that it is the responsibility of the patient (or in this case the patient's father), to do his own research and to make sure that care is going well. So many people have suffered at the hands of careless or overworked doctors; we do need to be vigilant. But the author does not stop there. His contempt for others is also demonstrated when he allows Damon and Damon's friends to read through and mock grant applications of people seeking assistance from the foundation. (Where does Weber get the chutzpah to include this crossing of boundaries?) And he is positively venomous about the rabbis who require more than one year's study in order to make bar mitzvah. Yes, Damon is bright and can learn his Torah and Haftorah sections quickly, but several rabbis apparently do not see a bar mitzvah as simply a performance, but as the culmination of some years of study and devotion to the Jewish religion. The author has Mitt Romney's tone deafness about the privilege that come with have lots of power and money. Weber does say he has to ask for financial assistance, but at the same time, he and his family manage to travel the world for years. The Webers live in a different world from the one most Americans inhabit.

So why give this book even a 3? Because although I have no sympathy for Doron Weber, the man, I have enormous sympathy for Doron Weber, the father who loses his son. Damon, who was saved as an infant and very young child by miraculous interventions by dedicated doctors, still falls victim to the diseases that afflicted him in utero and set him on his long, downhill path. Even the love of his father cannot save this child. And the death of a child is what every parent dreads. The story is by definition powerful and compelling. If only Weber had ended his book with a story or two about the scholarships given in Damon's name, instead of ending with a lawsuit against the doctors. Not that a doctor who fails to follow protocols should not be held accountable, but his own son's story is made smaller by the father's enormous anger.

[Carol · Rating 5 out of 5]

Immortal Bird: A Family Memoir by Doron Weber is a passionate memoir of Doron Weber's son, Damon. Damon was born with a huge health challenge. His heart was missing one of its ventricles. This made him a “blue baby:” He did not get enough oxygen for his body. There are several different birth defects that can cause this syndrome. My brother only lived for six weeks and had a different heart defect. So this experience of losing my brother to this syndrome made reading this book very personal.

The author does a lot name dropping and his portrait of his son seems too perfect. His family is affluent and he has a lot of medical connections that he has cultivated. That is the irritating part of the book. Once I accepted that I was deeply engrossed in the story. I kept wondering if Damon would survive his many medical crises. I was hoping so much for him. The author used some of Damon’s blog in the book and it seemed like Damon was speaking to me.

Damon struggled with the PLE (protein loosing enteropathy) which is sometimes a result from the operation that helped him after he was born. It was his parent’s constant battle to keep him alive, Damon loved the theatre and anything connected with drama. He had a lifetime of frustration with LPE and but that did not daunt his spirit.

Doron Weber relates his frustration with the medical “system” and careless but tragic mistakes in Damon’s treatment. I can believe what happened and understand the author’s anger. I have had similar experiences.

I encourage everyone who is interested in medicine and the struggles that a family goes through with a serious disease to read this book.

I received this book as a win from FirstReads but that in no way determined my thoughts or feelings in this review.

[Debbie "DJ" · Rating 3 out of 5]

Won this book through Goodreads giveaway.

This is a difficult book to rate as I have mixed feelings about it. It is the story of a father's deep love and profound commitment to his son Damon. Damon is born with a heart defect and eventually needs a transplant. The death of a child is always heartbreaking, especially of one so young who still manages to touch the lives of so many. What ensues is the struggles this father faces with our healthcare system. Yes, our healthcare system is deeply flawed and mistakes are often made. However, as a disabled person myself I was saddened by the ways he handled the situation. It showed me how the privileged have access to so much more and seem to feel they are the only ones who matter. The healthcare system behaved as badly as the father. I so wish this could have ended with love and forgiveness rather than a lawsuit.

[Wayong Weiss · Rating 4 out of 5]

Immortal Bird is, ultimately, a book about the love of a father for the indomitable spirit of his son.

Normally, if I read the above description, I would have little interest in reading that memoir. However, the child (the Immortal Bird) was so unique, intense & exuded such a fighting spirit (despite all the medical & physical challenges he had), that he held my interest & had me rooting for him.

At times, the description of the father's frustration & struggles bordered on the morose & romantic which irritated me a little. For in those moments, the father seemed to put his anger anger & grief of his son's conditions above his son's experiences & needs. From my work with families, I am familiar with how the client's/patient's caregivers tend to have more difficulty with adjusting & acceptance than the person (directly dealing with said condition). Even so, there were times that towards the end of the memoir that the narrative was self-serving at best & dragged on just for the sake of the father (rather than focusing on the positive experiences of parenting an amazingly talented young man).

And yet... just I felt dragged down & was starting to feel a bit manipulated by the emotions of the father, the narrative held together & the memoir ended satisfyingly without it being overly optimistic or angry. If anything, it made me want to learn more about the boy's acting career & other aspects of his life. In fact, if this ends up being republished, Immortal Bird could benefit from the inclusion of any 'outtakes' & extras such as more photos, film stills as well as Damon's writings over the years (letters, any scripts Damon wrote).

It's interesting that Doron Weber had very little inclusion of religion or spirituality or his hesitancy towards it (due to his anger or for other reasons). It's been almost a year since I read Immortal Bird, but I don't recall any mention of the family seeking counsel from a rabbi or chaplain. In fact, other than Damon prepare for his Bar Mitzvah & Doron explaining his wife's identity as a Scottish Jew & Doron's tenuous relationship with Isle of Skye as a Jewish American, there was little mention about the family's identity as Jews (the Scottish identification being more prominent) or how the presence or lack of region or spirituality shaped their grief & attitude towards life cycles & death. For this reason, if you are currently dealing with loss or depression, you may want to hold off from reading Immortal Bird until you are in a better mental state.

There have been several criticisms of Immortal Bird being pompous & self-serving. I can understand why others have this critique as like me, the other reviewers were initially expecting a memoir primarily focusing on Damon's rather than his father's, experiences. From the description of Damon, it appeared he was the more enlightened & accepting than his father. However, in the absence of Damon's voice, I appreciated Doron's memoir. And even though it may appear that I had some qualms of the book,I am thankful for having the privilege of reading it. For the strongest aspect of the memoir was Doron Weber's voice & his eloquent writing style. As I have read a number of memoirs, this one is among the more poetic & well written ones, which is why it utterly confused me when another (amateur) reviewer complained that publisher poorly edited Immortal Bird. Perhaps that individual was confused Weber's memoir with John Irving's auto-fictional memoirs or Gabriel Garcia Marquez's 'Living to Tell theTale'?

In conclusion, despite my few quibbles of the book, Immortal Bird is a worthy addition to any collection of parental memoirs & poetic-prose nonfiction. Highly recommended for libraries that have collections of memoirs, books about children with special needs or medical conditions, acting & playwriting & especially for medical libraries.Most importantly, Immortal Bird should be required reading for medical doctors and nurses, especially those who specialize in congenital conditions, heart conditions, endocrinological disorders & surgeons.

[Marnie · Rating 4 out of 5]

First of all, this story is awful. It is sad and frustrating and maddening. Sure, there are bittersweet and happy memories within the reflection of Damon Weber's life as told by his father, and in fact, the majority of the book is just that. But the last quarter of the book or so is what elicited the frustration for me and made me feel the helplessness the Webers must have felt being at the mercy of an incapable doctor and a flawed medical system.

Damon's father, Doron Weber, tells the story of his first born son Damon's life, from his first heart transplant at 6 months through the aftermath of his second heart transplant 17 (or so) years later. Granted, this is all told in retrospect and he's gotten criticism for doing this with rose-colored glasses, painting Damon as too perfect. I hardly think that's the point. To any parent, your child IS perfect despite his/her many faults. Often, those faults become what make him who he is, and I think you'd be hard-pressed to find a parent who lost a child paint a picture of the child that doesn't reflect that perfect nostalgia. Doron said "It's surprising what comprises an acceptable quality of life when the alternative is unknown. Never has the status quo looked more appealing and worth hanging on to." Similarly, once you lose a child, I'd imagine that any of those flaws, faults, or imperfections would be welcome and appealing qualities when you consider the alternative of not having them there at all. Ever again.

After 12+ years of relative health, Damon and the Webers are put through a rough 3-4 years as Damon gets diagnosed with another disease, which is linked to his initial heart condition. Damon's dad exhausts every avenue possible, doing extensive research, connecting with many doctors across the country to get expert opinions, and only goes for the heart transplant as a last resort. I'm fairly sure he and his wife never get to fully exhale and relax during any point in these years. At one point he references wanting to worry about his child's cold or a fever, something so "normal" that other parents worry about. Anyway, he is skeptical of the Columbia heart transplant team from the beginning, feeling like they've missed a number of routine things. His calls go unanswered for days. As his son is in emergency state, none of his doctors are around for days. Doron screams at doctors in the hospital trying to get someone, anyone to help them. And due to hospital protocol, they don't. Or they take their sweet ass time in doing so. The frustration Doron feels is palpable, especially since HE (not a doctor) caught some of the things the doctors should've caught. Having to relive those last few months of his son dying, knowing that there were preventable mishaps that this "credible" team of doctors missed has got to be so maddening.

As Doron says, "no one that you love dies once or ever stops not being alive, and nothing you do can change what happened or bring back what's gone."

[Ann · Rating 3 out of 5]

I wanted to like this family memoir written by a father about his wonderful, talented and gifted son. Damon is born with a congenital heart defect, develops complications, and eventually needs a heart transplant, which he doesn't survive b/c they misdiagnose rejection of the heart instead of an infection. I got a great idea of who Damon is and how wonderful he was, but one of my struggles in reading the book was over how much unacknowledged privilege this particular family had. Damon visited specialists all over the country; his father consulted with numerous people, including nobel laureates, about his son's medical history. Experimental treatments were tried when conventional ones failed, and his parents, both highly literate in science, read the research and attended conferences on Damon's fatal complication. It's not a helpful book for navigating the health care system for the average person, and this would be fine, except that the book is written is though any parent can do this for their child, when very very few have the resources for this kind of intervention.

While Weber makes a great case that the Dr.'s failed in Damon's heart transplant, I found myself reading against his interpretation of events and thinking about how the medical *system* failed in Damon's case. B/c heart transplants earn hospitals about 1/2 a million dollars, there were several options for Damon's transplant (b/c they had good insurance), but b/c the Dr.'s that they selected were, as Dr.'s are, stressed for time, etc., they botched aspects of Damon's case. But there was never an acknowledgement that for most of us, choosing a place for a procedure isn't really an option anyway, and there was never an acknowledgement that Damon might have died regardless of how perfect the surgery and after care were.

I appreciate Weber's depiction of his son's extraordinary life, but I wish he had placed Damon's life a bit more in context of the complex U.S. health care system. What I came away with was something I already know--that even when you have money and resources, people still die.

[Ciara · Rating 3 out of 5]

probably more like two & a half stars, but that's the magic of these books about sick or dying kids. you feel bad marking them down too much. especially when you are pregnant & probably shouldn't even be reading about sick or dying kids in the first place.

doron weber's son damon was born with a heart defect. he was missing a valve, so his blood wasn't being oxygenated properly & his heart struggled to pump blood efficiently. additionally, several of his organs were on the wrong side of his body. he had a whole bunch of open-heart surgeries as a small child before finally recovering, more or less, & getting to be a regular-ish kid. he's smart, he achieves good marks at school, he likes acting. but weber notices, when damon is around eleven years old, that he's not really keeping pace with his classmates on the growing front. a routine test indicates that damon is suffering from PLE, a somewhat rare complication affecting kids that had the kinds of heart surgeries he had when he was little. if left untreated, PLE is fatal, & the treatments are kind of a crap shoot & can be as dangerous as a heart transplant. the webers cycle through all the treatments, from medication to a surgery to place a hole between two working valves so blood can be oxygenated to more medication. everything seems to work temporarily before damon starts getting sick again. the webers finally conclude that damon needs a heart transplant.

although i read the book in one evening, cover to cover, it moves kind of slowly. i feel that this is because it was written as a kind of catharsis by damon's father. he wanted to capture every moment of what happened with damon's PLE, from the early warning signs, to the treatments that went well, to the treatments that didn't go so well, to the good times damon had while he was sick, to the confusion & despair the family felt. i don't blame the guy at all--i'd undoubtedly have the same impulse in his shoes. it just doesn't make for the most compelling reading for someone who doesn't know damon or anyone else in the family.

[Jim · Rating 5 out of 5]

‘The Immortal Bird’ leaves you exhausted, but it must be read

I’ve never been in a train wreck, but I think the way I felt as I was finishing reading Doron Weber’s “Immortal Bird: A Family Memoir” surely must be close to that: Shaken, angry and, admittedly, in tears.

“The Immortal Bird” is about a family in crisis, specifically how a father (Doron) deals with the serious heart ailment of his oldest son (Damon, or D-Man as he calls his son throughout). Damon is born without the ventricle that routes blood through the lungs for oxygenation. As a youngster, he has a Fontan operation and, eventually, develops PLE, or protein-losing enteropathy, a common consequence that claims the life of 50 percent of sufferers within five years; 80 percent in 10.

This book grabs you very quickly and keeps sucking you deeper into Weber’s often obsessive pursuit of learning about his son’s ailment and what might be done to improve his prospects. In a way, the story line is like Lorenzo’s Oil, but this one is a total immersion of father and son and the family around them.

Weber bounces from medical institution to medical institution, from doctor to doctor, and, in the end, he is — he leads us readers to believe — that he was wronged by the institution he had depended on to save his son.

The story is written in a fast-pace, filled with tension, a continual roller-coaster of ups (hopes for good results) and downs (where things go wrong).

If you like medical stories, true ones, this book is a must read.

[Jill · Rating 5 out of 5]

I became more engrossed in this book than I have in any books for years. I finished it about a month ago and it is still with me. A true story about a teenage boy fighting a heart defect and the father who adores him. I was sucked in completely. For one, the writing is excellent. Second, the love the father has for Damon is truly humbling, He should have an honorary medical degree for the amount of medical research he does as Damon's advocate. Third, I was so captivated by the culture they exposed Damon and his siblings to, from film festivals to summers in Scotland. Last but definitely not least was how great this kid Damon himself was. While it is obvious that he is written with intense love, you can also see that others respond to his remarkable soul. My main issue was that I felt like his younger brother and sister got left out in the cold somewhat but that may be because the focus of the story is Damon's heart condition. Either way, I can't recommend this book highly enough. P.S. I wouldn't recommend googling anything about the tale before reading it. I read it cold and it made the experience that much more powerful.

[Bobby · Rating 5 out of 5]

I knew how this was going to end and hesitated to even read it, even though I won it through the "giveaway" program. But i figured if Doron Weber was brave enough to write it, I needed to honor his son, Damon, and read it. So glad I did. An unimaginable story of not loss, but strength. There are so many precious moments that I don't want to divulge masses of the story but I have to share my most poignant part. Near the end there is a moment when Damon, who is now 16, climbs into his father's lap (I can hardly type this) and they just hold on to each other. It took his father and this reader by surprise but I had the feeling when I read that part that anyone reading it is holding on to Damon as well. We don't want to let go. A remarkable tale written by a remarkable man about an unforgettable son. I too lost a son Mr. Weber but I've never been strong enough to put down on paper my feelings and dealings with that loss. Therefore, I share that tragedy vicariously through you and Damon and thank you for keeping your wonderful son alive within us all.

[Fran · Rating 3 out of 5]

This was a poignant story, but it made me think about all the families with children who are dying who do NOT have a lot of money at their disposal and cannot afford one tenth of the care Damon was able to receive. I feel badly for the writer because he loses his son, but he is a little narcissistic. This family clearly had lots of money--yearly vacations in Scotland, a second home, eating out and a big house in Brooklyn--and the gift of good health care. The fact that Damon's doctors were negligent is tragic, yes, but what is even MORE tragic is that hundreds of thousands of children just like Damon die every day, and no one knows about them. These children are poor, or they have no health care, or they live in a third world country. The world would be a better place if all children, sick or not, were cherished and loved like Damon was.

[Barry · Rating 5 out of 5]

THIS IS A FANTASTIC BOOK FOR ALLLLLL PARENTS TO READ. IT SHOWS TREE FAMILY LOVE OF THIER CHILDREN AND HOW THEY WOULD DO ANYTHING FOR THE HEALTH OF THIER CHILDREN.
ALSO HAVING A CHILD WITH TERMINAL ILLNESS I CAN RELATE TO DORONS DAILY TRIALS & BATTLES WITH DOCTORS, INSURANCE COMPANIES, AND POLITICS. MANY BLESSINGS TO THE WEBER FAMILY.
I PICKED UP THIS BOOK AND DIDNT PUT IT DOWN TILL EVERY PAGE WAS READ...EVEN FORGOT TO EAT LUNCH.. BUT WAS WELL WORTH PUTTING OFF A MEAL.

[fpk · Rating 3 out of 5]

I struggled with a rating for this book. It was well written, interesting and heartbreaking too. Doren Weber does overall, a good job of writing his story of Damon, his oldest son, who was born with a heart defect. Weber catalogues very carefully all the subsequent medical emergencies, the triumphs and then the final heartbreak. What I couldn't help feeling though, was that Doron Weber was an unreliable narrator. He is no doubt someone who comes from a very affluent, privileged background. Weber has friends in the highest of places- celebrities, eminent doctors, world renowned specialists, authors, lawyers, etc.. And he makes no attempt to restrain himself from name dropping in this book, That got pretty irritating fast. Money was no object for the Weber family. They vacationed in Scotland on the lovely island of Skye. Every August. And then there were trips to Martha's Vineyard, tickets to shows, games, premieres, etc. Dinner treats for Damon's many friends, and "warm cash" from the ATM was distributed without a thought. Doron Weber comes across as a very determined man, a man who thinks he can buy anything. He also projects an entitled attitude. He screams at his son's doctors, demands that they call him back right way, even when they're on vacation. Weber's center of the universe is his son. And he can't see beyond that. He fails to recognize that doctors, nurses, aides, all have lives. They have other patients who need critical care too. Weber seems to operate under the illusion all of us have: that we have ultimate control. In Weber's case, because of his prestige, his affluence and influence, he has been deluded into thinking all those things can be leveraged to ensure his son's health. It didn't work for Steve Jobs. It didn't work for countless others who have all the $ in the world.
I felt sad and heartbroken for him, though I felt his depiction of the professionals involved was skewed. Weber ends the story with an epilogue, where he states a lawsuit was filed against the doctors and hospital. Perhaps Weber is correct, there does seem to be some negligence on the part of the doctors-to communicate dangers, concerns, to follow the protocol more closely. And it does cost lives when something isn't followed properly. In this case it was a young boy, and that is the heartbreaking reality.

[Callie Rourke · Rating 5 out of 5]

wow. sobbing.
This was much much better than expected, especially since free books tend to be questionable but I’m thoroughly devastated by this story in the best way possible.
Tbh, while I understand the father was trying his best to tell the story in full, it did at times feel like he was trying to flex his connections and status. It took a bit away from the son’s narrative. But five stars nonetheless!

[ananasparachute · Rating 5 out of 5]

I have a habit (plainly evidenced by the books listed that I'm currently reading here) of starting books and abandoning them, or coming back to them later to chug through them, if they don't catch my interest.
There was no danger of that here. I blazed through this book in 24 hours or less.
I had actually never heard of Damon or his family ,in spite of their prominence that I'd learn about in this book, and vowed I wouldn't look up any information on Damon, Doron, etc as I didn't want to know the outcome before I read it.
Weber (Doron, I'll refer to the author by his last name and the others by their first names, to reduce confusion) certainly writes an amazing story that kept me guessing at every turn. I literally didn't know what was going to happen until the bitter, sad ending I was hoping wouldn't occur. A masterful writer (Which isn't surprising after I read he was a Rhodes scholar, among other prominent titles), he doesn't use cheap foreshadowing or corny prose. He writes beautifully and poetically, but also with a raw "realness" that made me feel like I was experiencing the ups and downs with the family.
Damon Weber is portrayed as a remarkable young boy/man (we know him from age 12-16 in this book) who is born with a congenital heart defect that they believe has been 100% successfully treated with early surgery. He enjoys pretty good health for years, being very active, until his family begins to notice the fact that he isn't growing, that he's paler than usual, his abdomen is distended etc. Minor symptoms at first, but Damon is eventually diagnosed with Protein Losing Enteropathy (PLE), a complication of his heart condition and corrective surgery that can be fatal.
Like any parent would, Weber goes on a crusade to find the best and most cutting edge treatment that he can for his son. Unlike other parents, Weber is an obviously affluent New Yorker with connections in high places- by virtue of his career (and I was confused as to what he actually did until I read up on it,; he's program director and vice president of the prestigious Sloan Foundation. I'll admit it, I feel stupid, but I'm still a little clueless as to what he actually does, it's all lost to me in very technical and glowing resume speak, but he's an important guy, to put it in layman's terms.), he seems to know everyone from movie producers to the top cardiologists and surgeons in the world. Sensibly and , again, like any parent would, he makes use of these contacts and his own scientific education and knowledge (to his credit, he doesn't mention that he's a Rhodes' Scholar or the finer points of his education, which was refreshing from a man of his stature.) to find the very best treatment he can get for Damon, involving hospitals such as Columbia, CHOP, Mt.Sinai, Mayo Clinic, and other foundations that most of us could only dream of accessing. I don't fault him for that at all, of course, I applaud him for it- who wouldn't do the same thing for their sick child?
They eventually settle on Columbia for Damon's treatment, as it is close to their home in NYC and that is where he has a history of care. We soon learn, terrifyingly, that prestige, knowledge, and money can't always preserve you from medical errors that can prove fatal. After a seemingly triumphant heart transplant, a fatal medical error of failing to treat Damon's apparent Epstein-Barr virus , which he contracted from the donor and the cardiologist fails to mention or acknowledge this until it's far too late, he becomes septic and ultimately his organs completely shut down. He passes away at the age of 16 and 8 months.
The beauty in the story, though, lies in the fact that the book is a testimony to the person Damon Weber was- a gifted actor, a friendly kid with wit and wisdom beyond his years, a kid everyone liked. He is brilliantly academic, gaining admittance to top-flight schools in NYC, and without any kind of false bravado or a trace of preachiness or martyrdom, faces down his biggest health challenges to the very end, in stride.
One of my favourite and most striking moments was when Weber is in the hallway, having it out with the negligent doctor on duty, who calls security. Damon, desperately ill, appears in the doorway in nothing but his medical wiring and tubing, demanding ferociously they not treat his Dad that way. His indomitable spirit comes across without making him some kind of unreal saint or saccharine "inspiration porn" as too many other tomes of people with disabilities tend to do. This book made me root for this kid, and this family, right to the very end. They were simply remarkable but also likeable people.
My critique would be, and this is not a fault of Weber's, that I wish I could read just one autobiography involving the parent of a disabled child where the parents are not affluent, or at least not financially comfortable. Weber never expressly flaunts their wealth, but it's evident: the home in the Catskills, annual holidays in Scotland, large home in NYC, his education, his wife's background (Rosenthal china fortune, although , her eccentric father does disinherit his family), and the fact they can choose between treatment at the top medical facilities I mentioned, give a pretty plain picture. Weber only really mentions finances once, when he says he will have to approach his employer for assistance as his wife , Shealagh, has quit her job to care for Damon and the hospital bills are mounting. I can't even imagine what the hospital bills looked like in the American health care system with all the consultations, operations, medical procedures, medications, and hospital stays Damon has. It boggles the mind. But ,while he doesn't get the initial raise he wants, he does get "help" from his employer (I assume financial), and their lifestyle is not impacted , so I can only assume they manage just fine: they keep their home and their vacation home,the siblings have lots of extra curriculars, they keep the vacations, they have a car in NYC,etc. Nothing changes there. Weber certainly isn't to be faulted for his success at all. I just would like to read one book where the family might face homelessness as a result of hospital bills, or be stuck with an HMO in a crappy state hospital because going to a place like Columbia would be an unrealistic pipe dream. I guess parents in those positions often don't have the means, privilege, time, and education to write books like this and get published, sad but true.
I wish that at one point, Weber had acknowledged his and his family's immense privilege and the fact that he could even consult such top flight doctors is typically an unheard of luxury, and that it is his privilege, education, and notoriety that undoubtably buoy him to have the confidence to question and grill top doctors and have the courage to upbraid them in a hospital setting. Most "normal" parents would have just been thrown out- while security is called, he evades this and the doctors don't seem to treat him any differently. Most people wouldn't have the confidence or ability to advocate to this degree, or the educational ability to be able to interpret scientific papers.
I , probably like many others, kept thinking that if Weber got treated this way - (and his lawsuit unsuccessful)- is there any hope for any of us in the medical system? It's a sobering and terrifying thought.
One theme that is mentioned continually is how Damon is a gifted actor. Through connections to the top, Weber gets Damon a small role on "Deadwood", the popular (at the time) TV series. The director and other actors gush about how amazing Damon is in his role. I'll admit, I rolled my eyes a little at this part. Damon clearly was given a bit part due to who his Dad was. While I have no doubt he had talent, and stood out with his red hair and diminutive stature. there are rooms full of talented kids waiting to even get an unspeaking role on a tv show, to be an extra, and suddenly he gets a bit speaking role on a popular show- and is made a member of the Screen Actors Guild- with only high school and semi-pro plays before that? That was clearly privilege at work. I read such glowing reviews about Damon's role in the book (seemingly from everyone he met on set) that I watched the clip. He was- fine. Probably remarkable for a kid that had never done TV, but the clip is 48 seconds. I didn't find his performance that glowing or incredible. It was an average bit part by a kid. I feel terrible saying this about a child who has since passed on, but really..the New York Post calling him a "teen star" shortly after his death, referencing "Deadwood", is a stretch. He clearly got the role because of his Dad. That is slightly alluded to when Weber brings Damon to the set and says he can't promise him a role, and Damon is excited enough just to be there. To his credit, Damon doesn't seem snobby or to take his opportunities for granted, he seems to find joy in all he does.
I did wonder about his siblings, Miranda and Sam, and if they felt a bit slighted after the bo0k came out. I know the book was about their brother, but their father's focus seemed to be intently on Damon due to his health issues. This happens in a lot of families with children that have medical challenges. The family dynamics are barely touched on, and we hardly get to know Miranda and Sam. We also only get a rudimentary picture of Shealagh. It's like they are on the periphery and Damon is the centre- maybe that was due to the focus and perspective of the book, and the fact that Weber seems to have admitted "tunnel vision" when he throws himself 100% into a cause, as he did for Damon's treatment, but I wonder if they felt slighted. I also thought Weber came across as a stereotypical,demanding affluent NYC parent when, for example, he makes Sam constantly revise his middle school essay until it's perfect, with Shealagh urging him to let it go. When he admits he's very competitive when it comes to his kids and has high expectations. Not bad in themselves, but did the children feel pressured?
I'd love to know what Miranda and Sam are doing today as adults, but couldn't find anything definitive. It appears that Weber is still in the same prestigious role, and Shealagh has gone back to psychotherapy.
It's a powerful book, a beautiful book. Certainly not flawless, but one that will stay with you forever.

[Julie Smith · Rating 3 out of 5]

This review first appeared on my blog: http://www.knittingandsundries.com/20...

The title of this book is taken from Keats' "Ode to a Nightingale", which is appropriate, as this is a father's ode to his talented son which also includes excerpts from his son's blog.

Damon Weber is a smart, creative, funny teen who was born with a malformed heart that was corrected by surgery when he was young. By the time he is 14, however, he is still only 5' 6" tall and not growing, having been diagnosed with PLE (a disease which causes protein not be kept in the body) at 13, the disease being a possible side effect of the heart surgeries he had as a toddler. His parents, especially his father, research everything they can about the disease and, having the means to do so, explore as many feasible options outside of heart transplantation as possible in order to keep Damon with them.

As a parent, and knowing from the first pages of the novel how it was going to end, this was a sad read. I could tell that the author tried his best to communicate the feeling of love he had for his son, and wanted to let the reader in on a child who was unmistakably a bright light in the world. It was apparent that he tried his best to be fully informed, and also frustratingly obvious were the mistakes and inattention by medical staff as portrayed in these pages. Having had my own battle with doctors brushing me off before my own son's diagnosis, I know how that feels, and it makes a parent angry. It makes a parent angrier when the "cure" itself turns out to be worse than the disease, and due diligence is not applied in figuring out what the resulting illness actually IS (in this case, it should have been obvious to the doctors involved, but the initial prescribed treatment was the OPPOSITE of what should have been done).

To THIS reader, however, the telling often felt stiff, forced, and, at times, overly dramatic. Every now and then, I caught a glimmer of something .. whether it be the dread of foreboding or the happiness at a triumph, but then the writing would go back to a somewhat superficial recounting.

I know that this must have been a difficult story to write, and I commend the author for this tribute to his son's spirit.

QUOTES (from an ARC; may be different in final copy):

The world carries on as before.
But underneath my feet, deep cracks and fissures appear. I shiver and hear someone who sounds suspiciously like myself begin to sob and scream.


I feel my wife's suffering more acutely than my own, because my powerful feelings for Damon have not yet developed - fatherhood remains largely an abstraction to me - and I don't understand that this little pale infant with his reddish tuft of hair will become the center of my life.

From Damon's blog:

Honestly I'll never understand how I got through the last 3 years as well as I did. And now when I think of what I might have been able to do with those 3 years had it not been for PLE it makes me kinda sad. I guess I never really accepted it or admitted it before but now it's suddenly sort of hit me; I had a disease and a bad one, one that could and did kill people and one that no one really knew anything definitive about and who could blame them. About 10,000 people in America have had my operation (the original 1) and 10% of those get PLE that's not exactly much of a data base. And one that could have eventually killed me and was weakening me day by day.


BOOK RATING: 3 out of 5 stars

[Lori L (She Treads Softly) · Rating 4 out of 5]

Immortal Bird by Doron Weber is a father's tribute to his son, Damon, who died too early. Damon was born on August 8, 1988 with a congenital heart defect that required two open heart surgeries (the Fontan procedure) when he was a baby. Years later, a month after 9/11, it becomes clear to his vigilant and hyper-alert parents that Damon is not thriving and something else may be wrong. Damon has PLE, protein losing enteropathy.

After exhaustive medical checkups and intensive research by Weber, all signs seemingly point to the PLE being a result of the Fontan operation. Doron learns that if the medical community cannot find a way to stabilize Damon's PLE, he will eventually need a heart transplant. Finally it became clear that Damon needs the heart transplant, which brings in its wake a whole new set of concerns. One clearly evident failure was the medical community in charge of Damon's case - or rather their lack of taking charge and following through with the proper attentive need for care and concern - and even proper medication.

At the same time that his parents are seeking a way to help him, Damon is clearly maturing and showing himself to have the potential to become a great actor. Even while clearly not well, he still manages to thrive socially as much as he is able to and explore his talents and abilities.

Is this a memoir for everyone? No.

I just don't think this is a memoir I could recommend to some people because they couldn't emotionally handle reading it. For some people Immortal Bird would simple be too painful to read, especially if you have had a family member or close friends struggling to endure and maintain the attentiveness a long-term illness or condition requires. It is a tribute from a heart-broken father to his son that recounts the triumph and the pain. How fragile is our hold on life and yet even a life cut short has value and meaning.

Members of the medical community might want to read it as a cautionary tale on what not to do. There were some cringe-worthy medical moments that could have been avoided.

Highly Recommended - but this is not a book for everyone.

Disclosure: I received an advanced reading copy of this book from Simon & Schuster and TLC for review purposes.

[Amanda Kelley · Rating 4 out of 5]

I received an Advanced Reader's Copy of Immortal Bird from Simon & Schuster publishing company. So naturally I made this book a top priority and I finished it within 3 days of starting. I knew that it would be a hard book to read but I am very happy to have received it and read about Damon's Story. Disclaimer: This review is my honest thoughts. Receiving this free ARC had nothing to do with how I read or thought of this memoir.

Damon, Doron and the rest of his family went through something I can't even picture having to go through. It really reminded me about being grateful for the life that we do have and that while life might look hard at times, it could always be worse. It also made me realize how bad this world is becoming. Is nothing worth anything unless it has to do with money? Anyway, I am not trying to rant right now but Immortal Bird really touched my heart. It was a breathe-taking and heart-breaking story that I will never forget. I really hurt for Doron's story and I can't even picture what he had to go through just to write this memoir but I also realize that it was a story that had to be told.

With that being said, I urge anyone that is interested in Doron and Damon's story, to pick up Immortal Bird when it arrives on shelves February 7th and I hope that it touches everyone in the same way that it touched me.

[Lori Wilson · Rating 4 out of 5]

Initially, I was afraid to read this book as it dealt with a frightening subject; the death of a child. This family has the resources to be able to do just about anything to help their son fight the heart problems he was born with. The boy's father learns everything he can about his son's condition to the point where he often knows more than the medical staff treating him. I would highly recommend this book to anyone who has a chronic medical condition requiring many different doctors and hospital visits. The care offered to most patients in a hospital is often very poor. Mistakes are frequently made, many of the staff, including the doctors, are very apathetic. communication between doctors going on and of call is very poor. Never admit your child or an ailing elderly parent to a hospital without having an alert family member present 24/7 to advocate for the ailing patient! This is the only way you can attempt to get the patient the care he needs! Its indeed a frightening thought that care in our hospitals is this bad. In this book, the boy loses his life mostly because of staff incompetance!

[Rose · Rating 5 out of 5]

I knew what this book was going to do to me-I'm nursing the mother of all headaches from crying for half an hour over the last chapter- and yet I'm glad I read this story. Despite the ache in my heart when I finished it I'm glad to have read about this family. Doron Weber wrote a heartbreaking, important recount of his son's ordeal living with a heart condition I won't ever forget. After reading the story you can't help but feel like you've been put through the ringer emotionally but it's a story that should be shared. I can't begin to convey the rage I felt with the horribly irresponsible, unethical, & uncaring way in which Damon Weber was treated by the group of doctors who are, in my opinion, culpable for the outcome of his condition. That a child would be treated in such a cold, uncaring & careless manner is shockingly disappointing & infuriating. But shining brighter in this story is the heart of the story: the limitless amount of love a father has for his son & the unstoppable fighting spirit he clings to in order to help his son & his entire family.

[Alice Meloy · Rating 2 out of 5]

This is a beautifully-written story of a boy's life, written by his
father (who happens to be a professional writer). It chronicles the 16
years of Damon's life, from when he was born without a left ventricle,
through numerous operations and procedures and finally a heart
transplant, to his death as a result of an infection. Lots of medical
detail that shows how obsessed (in a good way) his parents were with
his health. Good description of how his family ( parents and two
younger siblings) functioned during those 16 years and how Damon
managed to have a life outside his medical problems.

You know how it's going to end (or why would Weber have written it
unless he was trying to expose the inadequacies of the medical
field?), so each new chapter has the potential of introducing a new
and more dreadful aspect of the medical problem. For me, it was almost
too much anguish and anticipated anguish to bear, so I had to skim the
middle 50% of the book. The writing saves a mostly grim story which
will be perfect for readers who like to have their hearts broken.