Immortal Bird Postscript

Doron Weber on Immortal Bird Aftermath

Doron Weber on Physicians’ Response to Immortal Bird

As I mentioned in yesterday’s post, Immortal Bird is drawing attention from cardiologists and other physicans. Some have spoken to me privately while others have written me letters. I chose one excerpt for today because it captures the complex mix of emotions from an obviously sensitive and compassionate physician who was moved by the book but wants to square it with his experience as a cardiologist and his professional allegiance. (I have omitted his name and any obvious identifiers via xxx):

“I thoroughly enjoyed reading “Immortal Bird” – could hardly put it down.  I am a retired pediatric cardiologist and am, therefore, quite familiar with Damon’s medical problems, but have yet to come into contact with a story so full of the emotions and thoughts that kids such as Damon and their families experience.  The children and their families travel a very difficult road filled with ruts and bumps that only they and other families in similar circumstances can fully understand.  I understand perhaps somewhat more than the average, as I had a xxx who suffered from a xxx for many years, dying at the age of xxx  x months ago.  You told a bold story – and your emotions are laid bare.

I  xxx and am very familiar with most all of the “players” in the book…

I am certainly not in a position to critique the care (or lack of it) that Damon underwent.  I do know that we physicians are not always the best communicators.  We are trained scientists, not trained healers.  We were selected for admission to medical schools not based on our “bedside manner”, but on our so-called “intelligence.”  I think that, in large part, has a great deal to do with  at least some of the issues you encountered.  There is so much more to say – but I think it best to stop here.

Again, congratulations on a wonderful, poignant and moving story.  Damon was truly exceptional!”

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3 thoughts on “Doron Weber on Physicians’ Response to Immortal Bird

  1. When asked to choose for our twelve-hour-old son between hospice care, cardiac transplant, or a very risky series of surgeries the doctor was advising us against, we were moved to tears. The doctor snapped at us, “This isn’t easy for me either.”

    I am hopeful that today’s medical students will be an improvement on the generation that considers the “soft skills” of appropriate bedside manner an optional “nice-to-have,” but not a necessary attribute. Hopefully, the books we’ve both written will contribute to that essential sea change.

  2. Thank you for sharing this letter. My daughter receives care in our home town (Phoenix) and in Philadelphia, so I know, very well, the differing communication skills between doctors, surgeons, nurses, etc. The mentality of one cardiac center does not fit all. Creating a team approach, which involves the parent, is essential to bettering outcomes. Hopefully, with people like you, we’re on the road to create effective changes in care management of CCHDers.

  3. thanks.very good blog and very good share.

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Doron Weber on Immortal Bird Aftermath

Doron Weber on Immortal Bird Aftermath

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