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Immortal Bird: A Family Memoir Hardcover – February 7, 2012

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Editorial Reviews

Amazon.com Review

Amazon Best Books of the Month, February 2012: Doron Weber lost his brilliant son Damon far too soon. Now he has channeled his grief and rage into a heartrending memoir about the struggle to manage Damon's illness while fostering his talents. Immortal Bird opens by proudly introducing us to the gifted Weber family: Doron, a Rhodes Scholar, met his wife at Oxford; their three children are loving and accomplished. Damon, the eldest, shows particular grace in the face of a rare and debilitating heart condition. As his son's health waxes and wanes, Doron advocates fiercely for Damon inside a medical system that consistently fails him. By the end, Doron's joy has faded and his fury has become palpable—the final pages are full of italics and brief, horrifying facts: "My son is disintegrating before my eyes." Damon's decline may be difficult to witness, but we would all do well to watch and learn from his extraordinary strength. --Mia Lipman

From Booklist

When Weber’s eldest son, Damon, is born with a heart defect, he devotes every waking hour to helping his boy lead a normal life. But Damon’s complex condition requires surgeries from his earliest months, and as a consequence, he develops a severe protein deficiency that is often fatal. Weber and his wife consult experts from the nation’s top medical centers, including the Mayo Clinic and New York’s prestigious Columbia Presbyterian Hospital (Weber is both impressed by the latter’s sophisticated medical technology and appalled by its often inept care). Meanwhile, affable Damon displays remarkable courage in the face of his deteriorating health, excelling in school and proving himself to be a talented young actor. He even lands a minor speaking role on the critically acclaimed HBO series Deadwood. For 16 years, Damon endures good days and bad, but when he becomes gravely ill, it’s clear a heart transplant is the only option. Sadly, its success is short-lived. Both heartbreaking and life affirming, this is a tender tale of the love between a father and son. --Allison Block

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Product Details

  • Hardcover: 368 pages
  • Publisher: Simon & Schuster; 1 edition (February 7, 2012)
  • Language: English
  • ISBN-10: 1451618069
  • ISBN-13: 978-1451618068
  • Product Dimensions: 6.1 x 1.4 x 9.2 inches
  • Shipping Weight: 1.3 pounds
  • Average Customer Review: 3.9 out of 5 stars  See all reviews (79 customer reviews)
  • Amazon Best Sellers Rank: #1,252,959 in Books (See Top 100 in Books)

More About the Author

Doron Weber is an American author best known for his critically acclaimed memoir, IMMORTAL BIRD (Simon & Schuster, hardcover 2012, paperback 2013. Born on a kibbutz in Israel in 1955, Weber is a graduate of Brown University (B.A., 1977) and studied at the Sorbonne and Oxford University (M.A., 1981), where he was a Rhodes Scholar In addition to his writing and his career in the nonprofit world--he has held positions at the Readers Catalog, Society for the Right to Die, The Rockefeller University, and since 1995, at the Alfred P. Sloan Foundation where he has created seminal programs in science and the arts--Weber has worked as a newspaper boy, busboy, waiter, and taxi driver, has competed as a boxer and triathlete, and, in the summer of 2012, biked 3400 miles in the Big Ride Across America.

IMMORTAL BIRD: A FAMILY MEMOIR, hailed as a "powerful and lyric" portrait of childhood and "an unforgettable evocation of the intense love between a father and a son," documents the family's navigation of the complex medical journey of Doron and Shealagh Weber's, first child. Damon was born in 1988 with a congenital heart defect (a single ventricle) that was successfully repaired, allowing him to lead a remarkably full life until he developed new complications as a teen.

At age 16-1/2, Damon received a successful heart transplant but then died of a post-transplant infection that was misdiagnosed as organ rejection and went untreated. The family brought suit in 2006 against New York Presbyterian/Columbia University Medical Center where their son was a patient but, as of 2013, the suit remains unresolved.

In addition to being named by The Washington Post as one of "50 Notable Works of Non-Fiction" for 2012, IMMORTAL BIRD was listed as Amazon's Best Book of the Month; on Indie Bookseller "Next" List; on Entertainment Weekly's "Must List;" and was one of nine official selections of the 2013 Chautauqua Literary and Scientific Circle, the oldest book club in America. The book has also had impact in the medical community where, for example, Congenital Cardiology Today published "A Cautionary Tale for Pediatric Cardiologists" in February, 2013, enumerating the many issues raised by Damon's case.

Since 1995, Weber has worked as a program director at the Alfred P. Sloan Foundation, a nonprofit philanthropy that supports research and education in science, technology, and economic performance. As Vice President, Programs, Weber runs the Public Understanding of Science and Technology Program where he pioneered the synergistic use of media and the arts to translate science for the public and launched national programs in theater, film and television that commission, develop, produce and distribute new work bridging the two cultures of science and the humanities. Grantees include Manhattan Theatre Club, Sundance Film Institute, Galatee Films, PBS, National Public Radio, BAM, World Science Festival. Weber also directs the Foundation's efforts to promote Universal Access to Knowledge by using emerging developments in digital information technology to make the benefits of human knowledge and human culture accessible to people everywhere. Grantees include Library of Congress, Internet Archive, Wikimedia Foundation, and Digital Public Library of America. In 2012, Weber made a grant for a pilot meeting on rice science at the Lee Kuan Yew School of Public Policy/National University of Singapore that brought together scientists from India, Pakistan, Bangladesh, Sri Lanka, Nepal, Bhutan and China in an exploratory effort at International Science Engagement.

In 2004, the Foundation received the National Science Board's Public Service Award, citing Weber's program "for its innovative use of traditional media--books, radio, public television--and its pioneering efforts in theater and commercial television and films to advance public understanding of science and technology." On behalf of the Foundation, he's also received the PBS Leadership Award for over a decade of support (2007); the Nielsen Impact Award for film from the Hollywood Reporter (2009); the Council of Foundations citation for "the visionary funding decisions of foundations in using media for their program goals" for a new web series, The Secret Lives of Scientists (2010); and, the Gold Communicator Award for a documentary about the Foundation's history, "Sloan at 75" (2011). His work at Sloan has been profiled in The New York Times, The Boston Globe, Fortune, Filmmaker Magazine and The American Way.

Weber serves as President of The Writers Room Board of Trustees, Vice Chair of the Digital Public Library of America Steering Committee, Advisory Board Member of the Science and Entertainment Exchange, and Board Visitor of the Wikimedia Foundation. From 1995-2005, he has served as secretary of the New York State Committee for the Rhodes Scholarships. He also is a member of the Council on Foreign Relations, the American Association for the Advancement of Science, U.S.A. Triathlon, and the Century Club.

In addition to Immortal Bird, he is author of Final Passages (with Judith C. Ahronheim); The Complete Guide to Living Wills (with Evan R. Collins, Jr.); Safe Blood (with Joseph Feldschuh); and op-eds in The New York Times ("The Best and the Guiltiest,"1993); LA Times ("Boomers Rewrite Candidate Profiles," 1996); Boston Review ("Sabbath's Theater," 1995); USA Today ("A Way Around Kevorkian," 1994); and Baltimore Sun ("BYOB,"1990).

Customer Reviews

Most Helpful Customer Reviews

10 of 10 people found the following review helpful By Shadow on September 30, 2012
Format: Hardcover Verified Purchase
After seeing a videotaped interview with the author on Richard Heffner's Open Mind, I wanted to read this book. In spite of some of the negative reviews here, I decided to purchase it and judge for myself. I'm glad I did.

The author is obviously intelligent well-educated, and well-connected by virtue of his work and background, but I certainly don't find that off-putting, as some readers reported. (Seriously, get over it, folks.) Certain people named in the book--scientists, film directors, actors--are part of Damon's story. To me, it seemed natural to include them. What comes across to me in this book is the depth of this man's love for his son, the unbearable agony of losing him, and an elemental desire to honor the memory of his wonderful child.

The shortcomings of the medical system in this case were frightening to read about. Though we necessarily hear only one viewpoint in a book such as this, that the parents felt so abandoned by the medical team at such a critical juncture was extremely disturbing. When the father of an ICU patient in a major medical center is reduced to racing down the hall trying to find someone to attend to signs of multi-system organ failure in his son, we ALL need to worry. I only hope that airing the systemic and individual failures recounted in this book will lead to some good.

Reading this book left me wishing I had known Damon Weber, and feeling a wee bit envious of those who did.
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8 of 8 people found the following review helpful By Laura S on January 8, 2013
Format: Hardcover
I enjoyed this book very much, and was engrossed from the first page. In it, author Doron Weber shares the very personal tale of his family's journey through their son's health struggles, the result of a congenital heart defect. As a reader, you feel like a close confidante, sometimes even an eavesdropper into the most intimate and poignant times faced by this family. But you also get a glimpse of their daily lives and how the entire family rallied around, yet maintained a sense of normalcy. Ultimately, you will feel cheated that you never got to know Damon, about whom the book was written. On the other side of the story, you will be unable to come away from this book without a healthy mistrust of the healthcare industry. I highly recommend this book - in fact, I have purchased copies for several friends and am currently reading it for the second time.
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9 of 10 people found the following review helpful By BB VINE VOICE on January 4, 2012
Format: Hardcover Vine Customer Review of Free Product ( What's this? )
SPOILER ALERT

The author pays a wonderful tribute to his first born son in this haunting story of love and illness.

I could relate to this book so much, that at times, I wondered why I tortured myself by reading it. I also have a son with health issues. He had a kidney transplant at a year old. Now at 14 yrs. old, he will have a liver transplant in the near future. Terms like EBV, low platelet counts, anti-rejection drugs, etc are all too familiar to me.

When you have a child with a serious illness you learn early on to be an advocate for your child-politeness sometimes goes out the window. I understand Doron Weber's frustration level with medical professionals. Naturally you want to do everything in your power to make your child well. As in anything in life; there is good/bad. I'm sure the author would agree with me that there are many many medical professionals that are experts in their fields and give excellent patient care. (He mentions many of them in the book.) But there are also people, events, & circumstances that are out of our control. It's sad to think that events did happen that were out of Damon's parents control and contributed to his demise. (It brings to mind some scary stories of my own.)

Mostly this book is about a great spirit in Damon and the love of his family to make things as "normal" as possible. Thank you for sharing your story to help other families.
I can't even imagine the continued grief for the Weber family. Hopefully this book will bring them an added measure of peace. My heart goes out to them.
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6 of 6 people found the following review helpful By Pamela V VINE VOICE on February 11, 2012
Format: Hardcover Vine Customer Review of Free Product ( What's this? )
Immortal Bird, by Doron Weber, is written by a man who has everything: a world-class education, a brilliant mind, a wonderful family and a huge heart. But the one thing he didn't have was his sons health, and for 16 years, Mr. Weber did everything he could, short of becoming a doctor himself, to try and save his first born son.

This book is a tribute to Damon Weber, a red-headed, artistic, fantastically intelligent boy, who was born with a major heart defect that was assumed to be have been corrected early on, but unfortunately led into another health issue known as PLE, a disease that doesn't allow the body to retain protein, and slowly but surely starves the person to death. The author and his wife thought PLE was a nightmare, until they began to fight it, and learned that dealing with the medical community, and the worlds best doctors and medical teams, was where the real horror lies.

As a nurse, I can attest to the fact that doctors do not return calls. And I have spent long, exhausting shifts keeping a patient comfortable and stable, only to be replaced by an eye-rolling lazy individual who barely listens to report, then goes for a smoke break, undoing all I've done on my shift in a few short minutes. Doctors, nurses, and almost everyone else you meet from the minute you step foot inside a hospital or medical institution, fail the patients who depend on them, by offering sub-standard care and attention.

The Webers had access to the best doctors money could buy, who turned out to be unreliable and uncaring, only showing up when things looked hopeful so they could receive the glory, then disappeared for days on end when Damon needed life-saving attention.
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