Immortal Bird Postscript

Doron Weber on Immortal Bird Aftermath

Immortal Bird Reading at Claremont McKenna College

I will be reading from Immortal Bird at Claremont McKenna College in Claremont, California on Monday, April 1.

The reading, preceded by an 11:30 am luncheon, will take place at 12 noon at the Marian Miner Cook Athenaeum.

My presentation is part of the Athenaeum’s semester long series on bioethics, as it applies to research, medical practice, and the health care system.

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“Urgency and Tenderness”: Immortal Bird in New York Times Sunday Book Review

Today’s (March 24, 2013) New York Times Sunday Book Review has a nice blurb on Immortal Bird in its Paperback Row column.
Under the weekly section devoted to “Paperback books of particular interest,” Ihsan Taylor writes:

IMMORTAL BIRD: A Family Memoir, by Doron Weber(Simon & Schuster, $16.)
“With urgency and tenderness, Weber chronicles the efforts to save his eldest child, who was born with a congenital heart defect, and their struggles against the received wisdom and arrogance of the American medical establishment.”

I don’t know who Ihsan Taylor is but I am most grateful for his kind words and succinct, telling summary.

Ask Congress for More Research and More Data Collection for Congenital Heart Disease

Last year after I published Immortal Bird, I was contacted by an impressive group called Adult Congenital Heart Association . They asked me to join them in Washington DC to help lobby Congress for more funding for congenital heart disease (CHD).

CHD is the most common birth defect in the U.S. and a leadinng cause of death in infants. Damon was afflicted with CHD and I knew only too well how little research and data was available for families grappling with this condition. Today there are over 2 million people in this country who live with CHD.

I was happy to go to Washington DC in March 2012 and to meet with various members of Congress to ask them to support more research through the National Institutes of Health and more surveillance and data collection through the Centers for Disease Control. I also gave them copies of Immortal Bird and told them Damon’s story.

This week on Tuesday March 19 there was another Lobby Day for CHD but unfortunately I could not attend due to a Board meeting in New York. However, the need is just as acute as ever for more NIH and CDC funding, and we are also asking members of Congress to join the Congressional Congenital Heart Disease Caucus.

The federal government is currently functioning under a continuing resolution at 2012 funding levels, due to expire at the end of this month, when the government will then run out of money. The House of Representatives approved its version of the bill last week and now Senator Tom Harkin included an ammendment to the Senate version that preserves life-saving NIH research for health issues and CDC funding specifically for congenital heart disease. Those who understand the critical nature of this issue should contact their Representative and ask him or her to support more research and more data collection for CHD and to join the Congressional CHD caucus.

For more information, please contact Amy Basken, Public Policy Manager at the Adult Congenital Heart Association: abasken@achaheart.org.

Immortal Bird Blog Tour, Video Trailer & New York Times Sunday Book Review Inclusion in Paperback Row

I have signed on for a blog tour in May with TLC Tours. They have already posted an announcement about Immortal Bird which you can read on their site. Run by Trish Collins and Lisa Munley, they come highly recommended by fellow authors and by my publisher Simon & Schuster.

Simon & Schuster has also posted a video trailer about Immortal Bird which you can view at Simon&SchusterVideos on YouTube.

And we recently learned that the March 24 issue of The New York Times Sunday Book Review will feature Immortal Bird in its Paperback Row column.

On April 1, I will do a reading at Claremont-McKenna College in California. Details tk.

Thanks for the beautiful letters that keep coming.

More Reader Response to Immortal Bird

Here are two recent reader letters about Immortal Bird, one just received today. Each covers a major theme of the book: the first and primary one was to portray a vivid and remarkable teenager and to give back life where it had been been stolen; and the second was to convey the challenges of dealing with a flawed medical system when trying to save a loved one.

Letter 1
I finished the book, yesterday. It took me less time, and more time than anticipated. I raced through Parts I and II and then slowly had to carve out the appropriate time for Part III.

It is an amazing piece of writing and a devastating story that you laid out beautifully. I’m humbled to have read it, to have a glimpse of Damon and to know the struggle your family endured.

I dog-eared one excerpt that I found especially poignant; the brief encounter between Damon and your high school Shakespeare teacher, Irwin Wolfson. I know why it spoke to me; the theatrics, the shakespeare, the colorful language, the chiding . . . there are many many reasons. I imagine that’s why you included it. Free will vs causal determinism. . . “Possibly it can make a difference, at the margins – which is where most of life transpires, so it’s not unimportant – but nothing can change the final outcome of a single fate.” Alas, I still don’t know what I believe; likely I never will….

The book is a beautiful portrayal of an incredible life. I think Damon and I would have been fast friends. I’m happy to feel like I met him, if only on the page.

Letter 2
Just got done reading your book on Damon and your families experience with living with serious illness…the good, bad and the ugly.

What struck me was the incredible honesty that was apparent in the book; no sugar coated false hope. Just a story that ended in a way that of course was unwanted.

My sincere sympathy in your dealings with the medical establishment ( another striking point in the book ). My experience the last few years with those that know and are doing “what’s in your best interest,” have been head exploding to say the least.

Not sure how many notes you get, but it’s always nice to get an anonymous pat on the back – “ya done good.”

—–

I remain deeply grateful to all the individuals who take time out not only to read Immortal Bird, but to write me such personal and affecting letters about the book. Thank you.

Indie Spirit Awards, Ted Talks, DPLA Launch Video & Future Weather Panel

I had a hectic week of foundation activity, flying to LA for last Saturday’s Independent Spirit Awards, where we had three nominated science-themed films: Robot & Frank (Best First Screenplay); Valley of Saints (Best Cinematography) and Here (Best Cinematography). None of our films won–top prizes went to better-known films like Silver Linings Playbook, Beasts of the Southern Wild and The Sessions, with all the stars attending because they were in town for the Oscars the following day. However, getting nominated is a big deal and a great way to introduce incredibly talented new filmmakers to the industry, which happens at the pre-awards cocktail reception outside the giant tent on the beach, as well as during the awards show itself.


From left to right: Nick Bruckner, Valley of Saints Producer, DW, Chris Ford & Jake Schreier, Robot & Frank writer and director and Chris’s girlfriend at the cocktail reception before the Independent Spirit awards show, hosted by Adam Sandberg.[/caption]

I managed to touch base with several studio executives, producers and distributors–we are still helping Valley of Saints and Future Weather get into theaters and have several new features slated for shooting in 2013, including Basmati Blues with several well-known stars to be announced soon and Midnight Sun with Jesse Eisenberg, Diane Kruger and Emile Hirsch. And we still hope to secure full financing for Michael Almereyda’s Experimenter with Peter Saarasgard and to welcome the film festival premier of Rob Meyer’s Birder’s Guide to Everything with Ben Kingsley.

I also caught up with Paula Malcomson, the actress who befriended Damon and took him under her wing on the set of Deadwood, where he made his national television debut in 2005. As readers of Immortal Bird may recall, Paula flew out to New York to speak at Damon’s memorial service, an act of enormous kindness and generosity, and I now gave her a copy of Immortal Bird in the new paperback edition. She remembered the day I took the photo of Damon that is on the cover–he was standing before one of world-champion bull-rider Gary Leffew‘s wild horses. Paula was seen most recently in Sons of Anarchy and in The Hunger Games series–she plays Jennifer Lawrence’s mother–and is the female lead opposite Liev Schreiber in a new Showtime drama Ray Donovan that is now shooting and will air in June 2013.

After 36 hours in LA, I flew back to New York for three days of proposal work and other activities–including an interview for a video we will screen April 18-19 in Boston for the official launch of the Digital Public Library of America (DPLA)–and then I flew back to LA for a TED dinner and all-day executive session featuring many noted speakers. I ran into at least half a dozen grantees and heard several interesting talks while discussing the Open Translation project with the TED people.

Within 36 hours, I was back on another plane to New York and drove straight from the airport to the Rerun Theater in DUMBO, Brooklyn, where there was a premiere screening of Future Weather. After the screening I participated on a panel about the process of grantmaking that developed this film, which included major support from Sloan along with the Nantucket Film Festival and IFP. The film’s director Jenny Deller and the producer Kristen Fairweather talked about the challenges of making an independent film. The New York Times had that day published a favorable review of the movie, “Science Anchors an Unsettled Life,” and it will run in New York for another week before rolling out in a limited release to select theaters across the country. It is not only an intelligent film that tackles climate change but it deals with three generations of women in one family–with several exceptional performances–it portrays the way Americans really live–in trailers and dysfunction but with love and decency–and it was written, directed and produced by women, a lamentably rare occurrence.

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: http://www.congenitalcardiologytoday.com/index_files/CCT-FEB13-NA.pdf.”
–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.

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Doron Weber on Immortal Bird Aftermath

Doron Weber on Immortal Bird Aftermath

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