Immortal Bird Postscript

Doron Weber on Immortal Bird Aftermath

Archive for the month “February, 2013”

Reader Letters About the Culture of Medicine: Is It Terminally Ill?

I have probably received more letters about the problems with modern medical care than any other subject in Immortal Bird. The two letters below are interesting because they come from relatively “privileged” readers: one was a medical student who left the field to become a scientist because he was so disenchanted with the practice of medicine; the second is a well-connected person for whom cost and access was not an issue but who nevertheless felt mistreated by the system.

Reader 1

I just finished your book. Let me first say that I am so sorry for all that has happened to you and your family, and that I think your book truly honors Damon. I also wanted to let you know that what you wrote rang absolutely true to my own experience; the culture of medicine is profoundly damaged, and most of the time, for lots and lots of inexcusable reasons, no one minds the store at all. Maybe at some point I can have a conversation with you and tell you why I don’t practice medicine, but it mostly has to do with the intersection of my horrible personal experience xxxx and the near total lack of responsibility I observed at some of the best hospitals in the world while I was in medical school. I am not exaggerating when I say that I loved — really loved — the practice of medicine, but couldn’t forgive myself if I became part of the problem, and so I left for the bench. Your book reveals an unappreciated and profound truth, and reminded me of how lucky I have been.

Reader 2

I finished your book over the weekend. The story is heartbreaking, of course, but even on the page Damon’s spirit is infectious.

Without drawing wrong or tone-deaf comparisons – given that in xxx case there was ultimately no other possible outcome and he had the time to live a substantial and exciting life – your dealings with doctors and hospitals brings back so many memories, painful and resentful: the wrong meds, the professional who don’t bother to look at the charts, the disinterested docs, the carelessness (both with people and care), the mistakes and the few bright spots, the first-rate nurses among them. If we all have these experiences – and we’re privileged, connected and aggressive! – why do we seem so unable to fix this very broken system?

To be fair, I also have observed hopeful signs, including the recent article in Congenital Cardiology Today which recommended that all pediatric cardiologists and cardiac surgeons read Immortal Bird and hold discussions and study groups to discuss the issues raised. I’m impressed that physicians have heeded Damon’s story and are using it as a basis for self-examination and comparing current practice and treatment of patients with his condition. I don’t know too many professions capable of this level of self-scrutiny, and the questions they raise are mostly the right ones. But the answers to those questions matter too, and this is where the jury is still out. For example, while communication is a big part of the problem and many things could be done to facilitate better communication between doctors and patients, correct medical treatment is the sine qua non of medical care and no amount of communication can fix a fatal medical error. The medical system needs to recognize when it has made a mistake and to come clean about it so it can improve the system, correct erroneous standards and practices and hold negligent and malpracticing physicans accountable.

As Dr. John Morore writes at the end of his article about Immortal Bird, “A Cautionary Tale for Pediatric Cardiologists”:
“It’s too early to tell whether the book will stimulate positive changes in us or our program.
Hallway discussions are continuing…


Great Reading and Great Reads Review of Immortal Bird

Tonight I did a private reading to celebrate the paperback launch of Immortal Bird at the home of a colleague. There is nothing like the intimate atmosphere of a private living room with friends and colleagues gathered around. I could feel the audience’s strong empathy and they also asked excellent questions. And of course I never tire of speaking about Damon and reading from his blogs.

Earlier in the day my publisher forwarded a wonderful review of Immortal Bird from the Great Reads section of Shelf Awareness, the book industry newsletter. Under New in Paper: February, the tag line reads:
Discover: The compelling narrative of a father’s quest to save his son; a memoir of family grace; and a profile of a teenager whose wit and stoicism transcend his illness.

Holloway McCandless, a blogger at Litagogo: A Guide to Free Literary Podcasts, concludes her review this way:

“Immortal Bird’s momentum and the author’s prose style peak in the last third of the memoir, as the Webers end up battling an overstretched hospital and a villainously cavalier doctor. In the dramatic and unforgettable debacle that ensues, Damon and his parents achieve moments of devastating grace. By writing Immortal Bird, Weber has transformed his family’s experience of medical strife into a work of art that teaches us how to advocate, how to love and how to transcend the unthinkable.”

Immortal Bird Recommended as “Cautionary Tale” To All Pediatric Cardiologists by Leading Medical Publication

–Today I received an email from Dr. Alvin Chin at Children’s Hospital of Philadelphia that “A publication which is a monthly newsletter to all pediatric cardiologists has made Immortal Bird its lead topic:”
–Apparently a Dr. John Moore, Professor of Pediatrics at UCSD School of Medicine and Director of the Division of Cardiology at Rady Children’s Hospital in San Diego wrote the lead article, A Cautionary Tale for Pediatric Cardiologists in which he recommended “that all congenital cardiologists and cardiac surgeons read Immortal Bird.” Moore purchased 3 dozen copies of the book and gave them to all the fellows, cardiologists, surgeons and nurse practitioners in his practice before holding both formal seminars and informal discussions about the medical issues raised in the book. He drew a large audience and wrote:

Immortal Bird is a powerful personal tale of the loss of a child, and it also provides important lessons for the congenital cardiology
community. Damon’s story should inspire us to strive for the best possible communications with families and with one another. Review
and consideration of the medical issues raised in the book may lead to improvements in the way we care for and treat our patients. I highly recommend that all congenital cardiologists and cardiac surgeons read the book.”

While Moore had certain issues with me, he went on recommend the book be used as a study guide and to stimulate broader discussion about how physicians should treat patients.

Immortal Bird is so loaded with relevant medical and behavioral topics that I decided it merited being the focus of discussion for two sessions of our regular fellowship educational lecture series. I purchased three dozen used books on Amazon, and provided a copy to each fellow,cardiologist, surgeon, and nurse practitioner in our program. I scheduled one-hour medical and behavioral sessions to occur two months after I distributed the books. I thought that the “readers” among us would finish the book quickly, and word of mouth would take care of the rest. I was right. After two months nearly everyone had read the book, and I was party to many informal discussions about it. By the time the scheduled sessions rose on the calendar, I expected and received large audiences. ”

Commenting on the article and the use of Immortal Bird by pediatric cardiologists, Dr. Chin wrote me. “He has taken the initiative to educate all of his troops, in terms of “lessons learned”…..or in ObamaSpeak, “using this as a teachable moment”. I think that Immortal Bird has had an effect on the congenital heart community, but it’s hard to quantitate. This is one piece of tangible evidence, though.”

Being Your Child’s #1 Advocate & Learning From Patient Families: Reader Letters

Two letters, one from a patient family who met with a similar loss of faith in the medical establishment as described in Immortal Bird–and had a similar, determined response re taking personal responsibility for their child’s care–and then a thoughtful letter from a sensitive but restrained physician who understood the value of Damon’s story , and stories like Damon’s told from the patient family point of view, for practicing residents and fellows.

Patient Family Letter

I am a parent of a child with tricuspid atresia. Our daughter recently had the Fontan procedure two months ago and, at 21 months, she is doing great.

My wife and I just heard about your book on Science Friday. I haven’t read it nor do I have much to say in this email other than I am very excited that you have written the book. From the Science Friday transcript, both my wife and I saw many similarities in our approach to our daughter as you had done for your son. Soon after she was born, we quickly lost all faith in the medical establishment, doctors, especially nurses. After our observations of complete misunderstandings among the doctors and nurses and especially the lack of communication with anyone involved in her care, we were really frustrated and continue to be with the medical care for our daughter. I sincerely hope that more parents of kids with heart defects will read your book and recognize the importance of being the #1 advocate and medical caretaker for their kids with special hearts.

Physician Letter

Dear Mr. Weber, I am a pediatric oncologist at Memorial Sloan Kettering Cancer Center. A friend of mine recommended your beautiful book about your courageous son. I for the first time while reading a book on my iPad literally forgot I did not have a real book in my hand and tried to turn the page. I will ask my residents and fellows to read your book so they can understand what families go through and how physician’s speak and care for their patients and families. I am so sorry for your loss.

Even Tragedy is Not Unique: Distressed Reader Letter (one of many)

While Damon was a unique individual whose remarkable life I tried to honor and celebrate in Immortal Bird, I have long understood that his case was not unique. The human negligence and carelessness, and the series of misdiagnoses and medical errors that led to his wrongful death, happens every day in hospitals across America (just as many wonderful physcians perform life-saving acts every day). This was one motive for writing Immortal Bird, and for bringing our lawsuit against New York Presbyterian/Columbia University Medical Center: to expose the problem, bring those responsible to account, and prevent such tragedies from happening again. I have received many letters with similar stories. Below is one that struck a familiar, painful chord.

Dear Mr Weber

I just finished reading your moving memoir ” Immortal Bird” and I truly beg you to please contact me. I recently lost my husband ( I will send his obit and pictures in a separate email) under such parallel circumstances at Col-Presby that I was screaming and crying as I read the end of your book.

I am completely devastated but I too must push for accountability for the unnecessary loss of his life. Your thoughts and advice would be very much appreciated.

The arrogant and dismissive manner in which we were treated was unbelievable to me–until I read about your experience!!

The ” unintensive” care that we received in ICU, the absence of appropriate care on the weekends and before and during holidays, the multiple layers of errors, the hovering outside his room in the minutes prior to his passing, and the cavalier response of nurses are just a few of the issues we faced. I and our 2 daughters were with him around the clock and the disrespect exhibited when we asked questions was shocking. I had to request special meetings on 5 different occasions.

The downward spiral was precipitated by the sepsis and surgical errors after his transplant. Post-death we have had to deal with medical record fiascos!! Col-Presby is proving to be a profit center for sure…!

The world lost an incredible treasure when it lost Damon!! My husband was also a treasure– a beautiful soul who dedicated his life to serving the underserved in our society.

New Cover for Immortal Bird and Physician Letter on the Importance of Character

Below is the new cover for the just released trade paperback of Immortal Bird.


Meanwhile I continue to get reader letters and am behind on posting so am including an interesting physician letter about the importance of character and taking personal responsibility in practicing good medicine.

Dear Mr. Weber, I am a practicing physician in Albuquerque, New Mexico, and I am sad to say also a graduate of Columbia University College of Physicians and Surgeons. . I read Dr. Groopman’s review of Immortal Bird and then purchased and read the book myself. It has greatly affected my thoughts about my own life and about the practice of medicine. In 1967 when I attended medical school, there were few women in this field and my parents felt so strongly about the error of my choice, that they refused to support my tuition and board. When I applied to medical school, I was told many times that I did not deserve a place in view of the fact that I would just marry and drop out, thereby wasting my education. So in reading your book I was greatly saddened about the care that Damon received from a team of women physicians. Now 41 years later I continue to practice medicine and was greatly influenced by your book. My husband, also an older physician and still in practice, and I have discussed how we can prevent ourselves from falling into “thinking traps” – how we can avoid missing critical data either through affection for our patients and difficulty in imagining anything bad happening, or even more important through arrogance and thinking that we are experts and so “know it all. ” The only answer we can come up with is really taking time to think about our patients, their data and trying to go through all labs and xrays with care. This is time consuming and cannot be accomplished in the setting of the current “factory” approach to medicine. Both of our children are family doctors and our hearts ache to see them overwhelmed with too many patients, spending nights and weekends typing notes and checking labs. I refuse to see patients while typing on a computer and will continue to take my time until I am satisfied that I understand all that is necessary to make a proper assessment. If our administration will not permit this, then I will know I have to retire. Still the bottom line seems to be one of character – I think the kind of doctor I would wish for myself and my family – and would aspire to be myself – is one who really takes responsibility personally – who can’t rest if something is off – who examines their patients at each visit – and really and truly cares about them as people….
In the meantime, your book has helped me to look at my patients in a different light, to try to do more to see their perspective and to do my best to treat them as I would wish to be treated myself. Thank you for this gift.

Immortal Bird Released in Trade Paperback

Today the trade paperback of Immortal Bird goes on sale. There is a new cover with a photograph of Damon. Below is the text of the press release from Simon & Schuster.

**Now available in trade paperback**
A Family Memoir
Doron Weber

(Simon & Schuster; Paperback; On Sale: February 5, 2013)

“A powerful and lyric portrait of a son and a vibrant family.”
Toni Morrison, author of Beloved

Best of 2012: 50 Notable Works of Nonfiction
“The story is Damon himself, his life, his loyalties, his courage, his eloquence (Damon’s blog excerpts alone make the book worth reading) and his family, all rendered with love, humor, pain and exquisite clarity. Beautifully told and skillfully paced, surprisingly joyful at times, this memoir above all presents an extraordinary young life. In the brightness of this life, the realities of illness, pain and medical imperfection are secondary for the reader, and ultimately disappear. The radiance remains.”
Washington Post

Entertainment Weekly, A-

“[A] ferociously tender memoir…lovely and heartbreaking.” PEOPLE (3.5 out of 4 stars)

“Beautifully written…[As] the end approaches, so does a sense of the miraculous: Like the brightest stars, Damon’s energy consumed him, even as it galvanized others. It’s that luminosity, carefully expressed by a devoted father, that makes this memoir so transporting.”
MORE magazine

“A heart-wrenching family memoir that describes the deep love between parent and child, while also celebrating the nobility and spirit of a boy who embraces life with a fiery passion.”
Book Page

“A father celebrates his son’s life while trying desperately to save it in this luminous character study¬–cum–medical odyssey…. Small, sickly, but charismatic and a natural actor, Damon cunningly conceals his physical weaknesses while extracting every ounce of happiness from his straitened circumstances; even as he fades, this kid seems to own every room he enters. Weber’s heartbreaking story gives us both a tragic cautionary tale and a moving account.”
Publishers Weekly

“Both heartbreaking and life-affirming, this is a tender tale of the love between a father and son.”

“In language at once vivid [and] heartfelt…Weber recounts the medical battle that followed [his son’s diagnosis] while powerfully conveying his love for his son. This one will disrupt your sleep.”
Library Journal

Damon Weber is a brilliant kid – a top student, skilled actor and a natural leader at school. Born with a congenital heart defect corrected by surgery when he was an infant, Damon lives a big life with spirit and independence that have always been a source of pride to his parents, Doron and Shealagh. But even as teenaged Damon continues to thrive socially and academically, his ever-vigilant parents start to pick up on worrisome signs: Damon’s physical development has stagnated, his abdomen looks distended, and his energy flags.

In the unsettling weeks after 9/11, their worst fears are confirmed: Damon has developed a serious and poorly understood medical condition that may require a heart transplant for survival. His body is leaking protein, and drastic moves must be made—quickly. As Doron sets off on a race against time for a solution, poring over medical studies and consulting countless experts about every treatment available, Damon musters his strength and carries on with the life of a venturesome teenaged boy. He learns to sail and ski, takes the unique opportunity to go horseback riding with a world-champion bull rider, maintains his studies, and hangs out with his siblings and friends whenever he has the energy. And he continues to prove his talent on stage, directing a 23-person play and even making his national television debut on the popular HBO series “Deadwood.”

Eventually it becomes clear, however, that Damon’s condition has deteriorated so much that a transplant is his only hope. Doron and Shealagh – after interviewing myriad doctors and hospitals – make the momentous decision to place him on the donor waiting list, and the lion-hearted Damon prepares for battle.
“Red Sox come back to win four consecutive games make world series and baseball history….Which goes to show you boys and girls: it ain’t over till it’s over,” Damon writes with trademark wit and verve on his blog in the months leading up to surgery.

Weaving Damon’s written thoughts with his own candid and beautifully rendered recollections, Weber gives readers an intimate glimpse of a vibrant and loving family as they embark on a dramatic journey to save their remarkable son—and a rare window into the mind of a teenage boy as he grapples with a grim diagnosis.
At once a triumphant coming-of-age tale, a moving portrait of a burgeoning friendship between father and son, and a searing story about the perils of modern medicine,
IMMORTAL BIRD (Simon & Schuster Paperback; On Sale Date: February 5, 2013) stands as an unforgettable testament to a young boy’s passion for life and the redemptive power of art in the face of the unthinkable.


Doron Weber is a vice president and program director at the Alfred P. Sloan Foundation, a nonprofit that supports science, education, and the arts.

IMMORTAL BIRD: A Family Memoir
By Doron Weber

Simon & Schuster Paperback
On Sale: February 5, 2013
Paperback price: $15.00
ISBN-13: 9781451618075 / eBook ISBN-13: 9781451618082


Chautauqua Honors Immortal Bird: One of Nine Literary Selections for 2013

Immortal Bird has been chosen as one of nine literary selections for 2013 by the Chautauqua Literary and Scientific Circle (CLSC), America’s oldest book club, founded in 1878.
Each summer CSLC chooses nine titles of literary quality and invites the authors to Chautauqua to present their work to an audience of approximately 1,000 readers. Previous authors include Michael Ontdaajte, Joyce Carol Oates, Geraldine Brooks, and Salman Rushdie.
I am very honored to be selected and will speak at the Hall of Philosophy on Thursday August 22 at 3:30 pm.
I will be a writer in residence at Chautauqua for the entire week, from August 18-24.

The Chautauqua Institution is a 139-year-old, not-for-profit, arts and educational organization situated on 750 beautiful acres in western New York. Its nine-week summer season of events attracts adults who travel from around the U.S. and Canada for an immersion in learning and the arts. It offers one of the oldest and most prestigious lecture and discussion platforms in American history, having begun as an approach to self-learning for people who could not attend college. The CLSC selections comprise an annual “reading list” that is recommended for lifelong learners.

Immortal Bird has been chosen for Week Nine because the theme of that week is exploring health care reform and innovation and Chautauqua likes to encourage a relationship between the book of the week and the morning lecture. Here is the entry from CSLC:

Week Nine — Aug. 18–24
Health Care: Reform and Innovation
With the 2012 election behind us and as we begin to feel the effects of the 2010 Affordable Care Act, what is the state and the future of health care in the United States? This week, Chautauqua will invite successful reformers and practitioners to share their insights. What innovations in science, technology, policy and procedure will contribute to a future where all Americans have access to affordable, effective health care?

Insitute of Medicine President Harvey Fineberg is one of Week Nine’s morning lecturers and is helping to identify other speakers.

Immortal Bird deals with the modern health care system as seen through the eyes of one family and has generated significant debate in the medical community. Several universities have considered adopting the book for medical school courses with an emphasis on ethics and the importance of good communication. Immortal Bird has also been featured as an example of medical error in several venues, including the recent Patient Safety Science and Technology Summit keynoted by Bill Clinton and co-sponsored by Mothers Against Medical Errors. As peviously noted, the lawsuit we filed against New York Presbyterian Hospital/Columbia University Medical Center almost 7 years ago remains unresolved.

Sherra Bacock, director of the Department of Education and Youth Services at Chautauqua who oversees CSLC, said that each book selected this year also has a Shakespearean theme and a play connected to it. For Immortal Bird, she chose The Tempest because Damon had a serious illness and the book describes “the harbors this family went through to help the young man survive,” Babcock said.

“It’s a very sad book, but it’s also a very happy book, because his son was a wonderful, different kind of child, and because he had health problems his entire life, they treasured what they could do.”

Readers of Immortal Bird may also recall a very significant scene that references The Tempest. After I take my family to see the film Finding Neverland–which shows that J.M Barrie created this magical place where no one ever dies or grows old to console his mother for the loss of her beloved son, his older brother–I feel an arrow pierce my heart and the next morning I discuss with Damon switching to The Tempest as the new model for the novel I am writing.

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Doron Weber on Immortal Bird Aftermath

Doron Weber on Immortal Bird Aftermath

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