Immortal Bird

GUEST: Doron Weber
AIR DATE: 07/21/2012
VTR: 05/25/2012

I’m Richard Heffner, your host on The Open Mind. And I started to produce and host this program 56 years ago.

All told, I’ve been involved with broadcasting for nearly six decades.

Yet during all this time I’ve never before today felt it necessary to ask my colleagues behind the cameras NOT to stop them if I break up in tears. If they do, it will be no different when we start up again.

For the book I want to share with you and to discuss with my guest today is at once the most dazzlingly well written and compellingly heartfelt tribute to the human spirit I’ve ever encountered. It is about in a sense a fallen angel.

Published by Simon and Schuster, Immortal Bird: A Family Memoir was written by Doron Weber, a New York foundation executive. It is about a death in the family.

In a sense it began with a death notice my guest wrote seven years ago that read in part: “WEBER–Damon Daniel, 16, died on March 30, 2005, from a post-transplant infection he fought like the lion he was. He had greater strength, courage and dignity than any man…lived a full, active and creative life despite severe congenital heart disease…Damon had striking red hair, blue eyes and pale skin. He was beautiful, inside and out. He had a powerful moral force, purity of character and integrity rare in this world…”.

As Dr. Jerome Groopman, a Harvard Professor of Medicine and the New Yorker Magazine’s noted staff writer on medicine and biology recently wrote about my guest’s book in The New York Review of Books, “Doron Weber’s Immortal Bird is the story of his son, Damon, born with a malformed heart incompatible with life, and cared for on the same pediatric ward where I was a medical student. The narrative is wrenching, and there were several times I had to put the book down.”

“In this book”, Dr. Groopman continues, “Doron Weber does a great deal of kvelling, the Yiddish term for effusive parental praise for a child’s accomplishments. Weber also portrays Damon’s remarkably mature grasp of his condition.”

Now, parental kvelling is fair – and, Lord knows, appropriate here. But I suspect my guest had more at stake in writing about his Immortal Bird. And I would ask what that is – about this luminous young man and, without naming or blaming them, about the medical professionals who tended to him. Doron?

WEBER: Well, first, thanks for that beautiful introduction … very moving.

HEFFNER: It’s a beautiful book … a beautiful, beautiful book.

WEBER: Thank you. My motives for writing the book … ahemm … I mean primarily at … it was a … it was an effort to bring him back to life. A kind of resurrection. I wanted people who would never get to know him, to know the kind of person he was. I think I missed him myself and writing the book, which took me several years was a way to spend more time with him. And so in a way to deny the fact that he was gone.

It was kind of the last thing I could do for him. Because it was my final gift to him and it was meant to be a gift to my family as well. And I wanted the world to … I guess I couldn’t abide a world in which he did not have some form of voice or existence. And so this was a way to bring him back into the world.

HEFFNER: And you did so, so beautifully. I, I … I don’t want to tear up as Groopman did and as I did again and again in, in reading the book.

Ahh, beyond Immortal Bird … why did you write the book? Beyond that memory.

WEBER: Ahhemm … (long pause) well there were, I mean multiple … it was, it was a place for me to go because I really didn’t know how to cope. So I am a writer and for me words are a way to make some sense out of the world, so putting my … the complex of feelings I had … I was also, as you alluded to … upset about the way he’d been treated by the medical profession and I wanted to tell that story as well, because my feeling is that while my son was unique, that our story and what happened to us probably was not.

And I thought it was important to get that down. But, as I said, mostly I was really motivated by a refusal to accept the fact that he was gone. And wanting to, to bring him back into the world.

And so … and I wanted people like you …you never met him, I wanted you … the fact that we’re sitting here talking about him … to me … and every time there’s a review and they publish a photo of him, I’m just so happy, regardless of what the review says. Because to me he’s back in the world and I just love seeing the photo of him and knowing that he is still with us.

HEFFNER: The … I remember … I didn’t meet him, I hadn’t met him … but I remember an occasion when there was a celebration … the anniversary … I think it must have been the anniversary of his death … when … out at his school the kids there …

WEBER: We created a prize in his honor …

HEFFNER: Right.

WEBER: … the Damon Weber Theater Prize at Brooklyn Technical High School …

HEFFNER: Right.

WEBER: … where he was a student and we give it to the, the student who excels in acting, directing or writing for the theater and I think it must have been one of those annual events. Another way to keep his memory going. And theater was really his first love. And he was a, a very accomplished actor. And so we thought that was one way to just continue … and as you know, the public schools are not exactly … the arts have taken a “hit” in the public schools … so it’s also a way to keep the theater program at Brooklyn Tech, which is known as more of a science and technology school … keep that alive.

HEFFNER: Has it?

WEBER: Yes, it’s helped. It, it has helped. I won’t say that it’s the single factor, but I think it has been a positive influence and I think the principal of the school who was originally … he was new and he had not known Damon and I think he was somewhat ambiguous about the Award … after a couple of years I think has really stepped up to the plate and owned it and been very supportive.

And I think generally they now have a Spring musical and Fall play, which had been endangered for a while, so I think that the school has, in fact, come out more strongly for the theater.

HEFFNER: Doron, has the scientific community learned more in these years intervening? Not learned enough, we never learn enough … has it learned more about what to do in this kind of rare case?

WEBER: I think PLE … protein losing enteropathy … which he developed which is a, a subset of patients who have his operation … develop that.

I don’t think they still understand the basic mechanisms underlying that and it’s one of the reasons … a group got in touch with me who read the book and asked me to help them lobby for more funding in Washington of congenital heart disease.

And I did go down to Washington and, and joined a delegation and we visited several Congress people and tried to argue, and, and they were very receptive and, in fact, it was one of the few line items that was passed in the new budget.

It was a relatively small amount, but the first time there was actually a line item for congenital heart disease, which is the leading killer of … birth defect … kills more children than all the childhood cancers combined and is, you know, afflicts over two million people, so there has not been much basic research, so we still need to learn more.

But in my son’s case there was also human error, which is of course, something that is … can I think can be corrected or can be improved upon and one needs to learn from mistakes. And the first step in that is to admit that you made a mistake. And then to understand why and where you went wrong and then, the next time, to, to do better.

HEFFNER: But you’re convinced that on the level not of human error, but of on the level of putting national resources to work that some progress is being made.

I ask that question as someone who had congenital heart disease and I …

WEBER: Really.

HEFFNER: … wondered about what efforts were being made. And I wondered whether there is anyone in the Congress today who takes the lead, who has taken the lead in this area.

WEBER: Actually I think Senator Durbin …

HEFFNER: Dick Durbin of Illinois?

WEBER: Yeah. Has been … ahhh … possibly for … well one never knows what motivates people but he, he was a champion of this bill … got this legislation passed within a year. And I think in the House … Gus Bilirakis a Republican from Florida has also been supportive. But those are two people that come to mind. That have actually lent their support in, in a strong way.

And I think Richard Durbin was the sponsor of the legislation that, that passed … surprising … within one year … and it created, for example, national surveillance system through the CDC.

You know, the first thing is you need to track how many people have this …

HEFFNER: MmmHmm.

WEBER: … and to the extent, the prevalence of it. And no one has ever done that. So, they’ve set up a national system to begin to get the data and then through the NIH, we’re also hoping to get some more … you need animal models in order to understand the mechanism … how a disease operates.

Ahemm, so there really is not even a rudimentary understanding at the, at the cellular, molecular level of what’s going on here. So we do … I think some small progress is being made and more needs to be made.

HEFFNER: Has this not been a priority of the institutes at this point?

WEBER: Surprisingly, it hasn’t. Partly ‘cause you need a voice and you need people lobbying. And so there have been, you know, two groups … the American Congenital Heart Association and Mended Little Hearts that have been very active.

And I think the CDC also was supportive because they understood this was a kind of test case and example of, of a disease or syndrome that was not being adequately funded. And I think they were also … put their weight behind it.

But, yeah, you always think everything is being done, but, in fact, things fall between the cracks and there has not … it’s never been identified as a separate condition. Which of course it is and if you’ve suffered from it then you’re aware of, you know, of just how prevalent it is.

And, as people … in some sense as medicine improves, more people survive and live longer and then it’s a life long condition … you have to, you know, help treat people along the way, it’s not just something that you get through as a child … if you’re lucky.

HEFFNER: What, what … you know, Doron, it’s strange … as I read Immortal Bird I was thinkinsg that … oh, maybe not ten years ago, but twenty years ago, we had … you could identify Congress people, Congress persons who had a specific interest in health, some aspect of health … or one or another social cause, physical illness cause. We don’t seem to have that any more

WEBER: I’m not an expert there, but I, I have to say I was pleasantly surprised on the day I spent visiting Congress that they were receptive … we came with a delegation … about five of us, we visited three/four members of Congress. They were … or their Chiefs of Staff, their health, you know, experts were surprisingly well informed, were sympathetic. I think a lot of it has to do with, you know, they’re hard pressed, there are many competing issues. And I think you need groups, you need advocates … it really makes a difference.

So I’m not, I’m not actually cynical, based on my own experience about that. I mean I actually think I, I’m pleased that the legislation was passed, as I said, in this … during this recession period. It was, it was one of the few increases. And I’m hopeful that they will continue to support it.

But I think, you know, the other issue is the practice within individual hospitals. And there I think the issue for me is more that they’ve become too, too much about profits and not enough about people.

And that’s where the practice of medicine, I think, is going awry. And I don’t know if that’s a question of legislation to correct that. But I think that’s concerning for anyone who’s dealt with the modern hospital system.

It’s been, I think, taken over more by CEO’s, rather than hospital managers. There’s much more attention to the bottom line. Private equity firms have taken over a lot of the leading hospitals … are literally running them on a for-profit basis.

And I think what happens is you lose sight of the fact that the patient needs to be at the center of it … the hospital exists to make the patient better and everything needs to be viewed in terms of “Is it good for the patient? Is it bad for the patient?” and unfortunately if you’ve been in a hospital recently it doesn’t’ always function that way. And I think that’s, that’s a problem to me.

HEFFNER: Are you surprised?

WEBER: Ahemm. Yes.

HEFFNER: In contemporary America?

WEBER: I am surprised because I think health care should not be treated like any other industry.

HEFFNER: I wasn’t asking about a moral judgment … you say “should” … I’m asking, literally, whether you’re surprised in contemporary America?

WEBER: Ahem, I think there’s been a deterioration. So I think even in my lifetime I have (clears throat) felt that it has gotten worse.

You know, they’re under pressure … I mean doctors, the profession … they feel, you know, under enormous pressure. But I think one needs to … it needs to be reconfigured and the priorities need to be, you know, set straight.

And in my son’s case, he had many wonderful, amazing physicians who took care of him. And in the book I try to, you know, pay them tribute …

HEFFNER: You do.

WEBER: … and then …

HEFFNER: You do.

WEBER: … and then there were others who really were not fully responsible and, and perhaps in some cases shouldn’t be practicing medicine.

And the problem with … medicine probably doesn’t have any more mediocre people than any other profession, but because the stakes are so high … when you have someone who really isn’t doing their job in medicine … then there’s the … it’s a life and death situation.

And so I think the risk, the tolerance for incompetence has go to be, ahem, lower in medicine.

HEFFNER: You deal with science and scientists at … in your foundation work. Do you find there a reflection of this phenomenon?

WEBER: No, I think science is different. I think first of all medicine is probably 50 to 100 years away from being a science. That’s one of the challenges, so that the great … the best doctors in my view are people who … in a bit they’re like artists … I mean they know all … they have all the knowledge there is to absorb, but, in fact, there are a lot of … sort of dark areas in medicine.

There’s maybe four or five things the medical profession understands really well and in those areas they can perform miracles and they’re amazing.

You move a little to the Left, a little to the Right and they fall into an area where there’s a lot of ignorance and then you have to be guided by intuition and a sense of, ahem, in a way creativity … and I think the finest doctors have that gift and are able to, to do that. And there isn’t always … there are always protocols, but sometimes they have to, they, they have to have other talents.

So I don’t think it’s …. It’s not, it’s not a pure science yet.

HEFFNER: But isn’t the pure sciences … aren’t they in very much the same situation were it is creativity and wit and human sensitivity that plays such a large role?

WEBER: Yes. That’s … yes if you’re talking about it at the highest level. But there are … there is more known and there are clearer pathways so there’s still a lot to be discovered in science as well. But I think there is more of a, a body of information in … depending on what field you’re in … than, than in medicine. Okay.

HEFFNER: Doron it’s so interesting that you, you say … a hundred years, perhaps … but why would it ever reach a level of pure science.

WEBER: It probably won’t but I think we’ll know a lot more. I would hope we’d know a lot more, for example, about the heart and the brain and as we get more knowledge, ahem, it will … we’ll hopefully be able to develop better therapeutics and it’ll be … you know, it’ll be clearer.

But it’s not going to do … (laugh) it’s certainly not going to do Damon any good. It’s not going to do you and me … you know we’re, we’re … I think we’re a long way from that. And so, for better or worse, we have to rely on human beings … on individuals. I mean we’re at their mercy.

So when you go to a hospital and, ahem, which is another reason why you have to watch everything that’s done and use common sense and be your own advocate and learn as much as you can about whatever condition it is that you or a loved one is involved with.

And really watch like a hawk. Because it’s run by human beings and human being make errors and sometimes they’re late, or they don’t look at the computer or they don’t look at the patient, they look too much at the computer …

HEFFNER: But those human beings are going to be human being one hundred years or one hundred and fifty years from now as well.

WEBER: Yeah. But what motives people to go into medicine, I think, may also change. I mean I think we should … you know, my own view is places like the Mayo Clinic, where the doctors are all on salary and they have a lot more time to give you. They’re not worried about billing you and they have to move you out, like within 15 minutes. So I think maybe we should help people go through medical school. Maybe we should not have them graduate with all those debts. But then we should put them on a salary and it shouldn’t be about being driven … I, I think they should earn a good … healthy income, but I don’t think it should be essentially about trying to make money.

I think people who go into medicine need to have other … and, and many of them do … need to have other motives.

HEFFNER: It so interesting … there was a doctor from Sloan Kettering who joined me at this table some weeks ago and when we played the program, and he spoke about the medical profession or the medical discipline … the “hospitalist”, most people were in shock.

Most people were in shock because they didn’t know we are moving closer and closer to the notion of somebody employed by the hospital, which puts you … I think most of us feel, at a disadvantage, rather than an advantage. Because you own personal physician isn’t the one who deals with you in the hospital.

WEBER: Yeah, that’s a, that’s a… that’s another issue. But I guess I’m also referring to the fact that, you know, at the end, a lot of doctors are not used to hearing patients … I mean one of the strongest reactions I’ve had to the book has been from the medical profession and I … when I was in Washington, for example, lobbying … a doctor/cardiologist, senior cardiologist came up to me and said, “Oh, I wanted to meet you because I’m reading your book … half the 26 cardiologists in my unit were all reading your book and discussing it. We don’t all agree with you, but we’re happy you wrote it and we think that part of the problem is communication and that we can do a better job communicating.

And I was obviously very gratified to hear that and I’ve gotten many letters to that effect as well. And I think part of the impact of this book is that the medical profession is not used to hearing enough from the, the patient … the patient voice.

And what it is that we experience. I think the more attuned you are, the better job you’re going to be able to do and no school … although the training of physicians needs to be improved as well. I mean I think they need to have more consciousness of what it is patients are feeling and going through. And another positive response to the book has been three different universities, at least have suggested to me they wanted to have the book adopted for courses, for medical students, just as an example of what it is the other side … how it looks to us … because the doctors are not … they’re seeing it from a completely different perspective. So I think the patient voices need to be heard more.

HEFFNER: I’m surprised that this cardiologist said there was disagreement.

WEBER: Ahem …

HEFFNER: What would the other side be?

WEBER: Well, I think, you know, they’re probably not happy that I brought a suit against the hospital, so that they don’t want to be … I imagine that would be one reason why they would not …

HEFFNER: Okay.

WEBER: Yeah, I think because, you know, their feeling is, well, you do the best you can and sometimes you can’t obviously prevent tragedies from occurring. And I think that’s true. I think in Damon’s case there was a different set of circumstances. But … so I think that’s hard for any physician to accept. I don’t know, of course, I’m, I’m just projecting … that’s what my belief is.

HEFFNER: Doron … I, I, I’m still puzzled by something you indicated, rather than said directly. And that is that scientists don’t face the same kinds of dilemmas, the same kinds of choices … they don’ t have to play at the same table. They are so important in our lives I don’t understand …

WEBER: Well, there’s a lot of … but science doesn’t deal with human beings. I mean that’s the big difference. On the whole, if you’re doing research in a lab …

HEFFNER: Okay.

WEBER: … you know, a lot of … the important advances today are in molecular biology and genetics and a lot of … at least at the basic science level, which is what I thought you were talking about …

HEFFNER: With the impact of what …

WEBER: … oh, is, is enormous. But, but, you know, the scientists that win the Nobel Prize on the whole are working in a research lab or they’re using, you know, telescopes to watch the … you know, they’re either looking at the very small or the very large … but they’re usually not working with, with patients. And so I, I …

HEFFNER: I understand.

WEBER: …there is a lot of uncertainty in science and there … and it is more arbitrary and it is subjective and creativity does matter enormously, too. I would agree with you.

HEFFNER: When Paul Nurse has been here and we’ve talked about science and the obligations of scientists, he’s rather down on the degree to which scientists, pure scientists communicate with their paymasters …

WEBER: Yes.

HEFFNER: … because their paymasters are certainly the public.

WEBER: No, and I agree. I know Paul’s views on that. And I think he’s right. And I think what, what he’s talking about is the obligation of scientists … they’re working in areas that are often not necessarily clear to the general public and unless he feels … that they … calls it a license to practice … that they, they need to earn that license and since a lot of it is funded by taxpayer money, they need to make sure the public understands exactly what it is that they’re doing and why they’re doing it, otherwise it threatens the, you know, continued funding of science, which, which gets pretty, you know, significant support from the Federal government.

HEFFNER: And it doesn’t now. I mean the communication doesn’t exist … to the extent that he would want it or I suspect that you would want it.

WEBER: Yeah. No, and I mean there are people like Alan Alda who’ve taken it upon themselves to educate scientists and their other efforts in that regard and, and, and in programs that I support we use theater and film and even opera to try and bring scientific knowledge more into the mainstream.

But that gap between the two cultures that C.P. Snow talked about is still very significant and persists across all cultures. It’s interesting … it’s not just the United States, it exists in China, it exists in Japan, it exists in India … so there’s something about human nature that seems to have created these two …this, this gulf and I think bridging it or trying to narrow it is very, very important in modern society.

HEFFNER: But I notice you didn’t say, you didn’t mention Western Europe. Does it exist?

WEBER: Yeah. It does exist … it, it, it exists in Western Europe as well. So it, it appears … I mean C. P. Snow was English …

HEFFNER: I know.

WEBER: … and, you know, he worried about the widening gulf and as society becomes increasingly scientific and technological we need to understand what exactly is going on, just so we can understand modern life.

Otherwise we cut ourselves off from a huge part of what, what is happening … where the advances are coming from where, how to solve a lot of these big problems. So, you need, you need to bring them into the conversation … though ideally I think the distinction is artificial … I mean I think it’s “one world we live in” and, and hopefully we can return to a time where we can see things whole. But at this point I think there is a kind of distinction.

HEFFNER: What do you mean return and I ask the question when I think we have one minute left. Seriously.

WEBER: Well, you know, I think of someone like Leonardo, who could see the world in one, you know, I, I’d like to … obviously we can’t all be Leonardo’s, but I think, in fact, he saw it more truthfully or clearly or openly than we do. He saw it whole.

HEFFNER: Doron Weber I think you’re an amazing person and I think your book Immortal Bird is amazing … Immortal Bird … A Family Memoir … Thank you fro joining me today, I didn’t cry … but maybe that’s because all the tears came out as I read your book. Thanks.

WEBER: Thank you very much.

HEFFNER: And thanks, too, to you in the audience. I hope you join us again next time. Meanwhile, as an old friend used to say, “Good night and good luck.”

And do visit the Open Mind Website at thirteen.org/openmind to reprise this program online right now or to draw upon our Archive of 1,500 or so other Open Mind and related programs. That’s thirteen.org/openmind.

  • Marcie Paddock

    For Doron Weber,

    If it were not for our friend and your fellow Big Rider (Jim Sheridan) I would not have known about your book.
    Thank you for shedding light on several important aspects of life…honoring a dear family member, the way in which medicine is practiced today and communication. I appreciate your fine example of ‘carrying on.” It’s important,
    difficult to do and a lesson for the rest of us. Your son would be extremely proud of you.

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