Immortal Bird Postscript

Doron Weber on Immortal Bird Aftermath

Archive for the month “March, 2012”

A Dad’s Crusade: Immortal Bird in the News

Today March 30 2012, on the seventh anniversary of Damon’s death, the New York Daily News ran an article about Immortal Bird and our family’s lawsuit against New York Presbyterian/Columbia University Medical Center that is still outstanding.

” A Dad’s Crusade: Son’s death at hospital detailed in his new book” is the tilte of the print edition, which includes two photos previously posted on this blog, one of Damon with horses and one of me and Damon on the Deadwood set.

The title of the online edition, which link is hereby provided, was more hard-hitting (and longer) . “Brooklyn dad turns son’s death into crusade for change in new book blasting Columbia-Presbyterian Hospital: Doron Weber’s book, Immortal Bird, chronicles the life and tragic death of his son Damon, who Weber charges was fatally misdiagnosed by the hospital during heart transplant surgery.”

It’s an excellent article and points out how the book is resonating with readers and especially among health professionals, with several recommending it be adopted for teaching medical students. And it shows how New York Presbyterian/Columbia University Medical Center, which continues to avoid handing over records and documents realting to the case, refuses to take responsibility for Damon’s death.

One correction: Damon was not fatally misdiagnosed during heart transplant surgery. He survived the surgery and was actually flourishing with his new heart but when he developed a well-known post-transplant infection, the hospital misdiagnosed it and kept treating him for rejection–the opposite treatment. They delayed treating him for infection for many weeks, until it was too late, despite the fact that he had no sign of rejection and every symptom of infection.

I will have more to say about the case but today is a day for remembrance and reflection. It began with an 8:30 am visit to the Day family plot in Woodlawn cemetery in the Bronx where we placed several peach tree blossoms, a red maple leaf, white daisies and white snowdrops on Damon’s gravesite. The front of his simple granite marker reads:

Damon Daniel Weber

Son of Doron and Shealagh Weber

Born August 8, 1988, Died March 30, 2005

On the back of his stone marker it says:

Actor. Writer. Director.

Son. Brother. Friend.

He had a lion”s heart

A pure, rapturous smile

And flame red hair.

He burns forever bright.

Immortal Bird Interviews and Appearances

It’s been a busy week regarding outreach for Immortal Bird.

On Monday I did a radio interview on the Lanigan & Malone Morning Show on WMJI 105.7-FM in Cleveland, Ohio.

On Tuesday, a photographer and a reporter from a local newspaper came to interview me for an article about the book’s impact that should run this Friday, March 30, which will be the seventh anniversary of Damon’s death.

Today Wednesday at 6 pm I will be one of six parents on a Summit New Jersey panel called When the Bough Breaks: Parents Moving Forward in their Journey  Through Grief. The panel is organized by Judith Pedersen, executive director of Interregnum, who is an expert on grief and loss. I will be signing books after  the event.

Next Monday April 2, I will do a reading at the Harvard Bookstore in Cambridge Massachusetts at at 7pm.

I am writing several articles for national publication.

And thank you for the beautiful letters which keep coming. Soon as I get a breather, I will post some more.

New Hope for Growing Blood Vessels & Other Parts

Dr. Alvin Chin the distinguished pediatric cardiologist, researcher and professor of biology at University of Pennsylvania School of Medicine–and as readers of Immortal Bird know, one of my most trusted medical advisors and mentors–recently sent me an article  from the Wall Street Journal  that describes an astonishing development: “To Fix a Heart, Doctors Train Girl’s Body to Grow New Part.”

Doctors at Yale University were able to use an absorbable tube seeded with stem cells from a young gir’s bone marrow to create a conduit that acted like a blood vessel, enabling the single ventricle patient  to get blood sent directly from her lower extremities to her lungs, where it could pick up oxygen and expel carbon dioxide. She is currently thriving. Most Fontan patients, like Damon, have a synthetic Gore-Tex tube constructed to help them get blood to the lungs but this can develop problems like clotting and infection as the patient grows. This tissue-engineered blood vessel represents a remarkable advance in regenerative medicine and holds tremendous hope for several diseases but Congenital Heart Disease (CHD) patients and their families should pay special attention, since the first successful patient was one of their own.

In addition to the article, Dr. Chin sent me his own commentary on the finding. It is dense but filled with his signature insight and sharp observation. I reproduce it here for those who are familiar with hypoplastic left heart syndrome, single ventricle and similar conditions:

“This is a story that was uploaded by Yale and featured in the WSJ. It has to do with the Stage III – the last of the 3-stage surgical palliation which most single ventricle pts currently undergo…..although Damon skipped Stage II and had only a two-stage palliation, i.e., Blalock-Taussig shunt (and repair of total anomalous pulmonary venous connection) as a newborn followed by lateral tunnel, non-fenestrated Fontan at age 4.

Most of the attrition so far has taken place at Stage I or in the time interval between Stage I and Stage II; however, over the next several decades, the most agonizing attrition will take place because of: (a) the constraints imposed by the Fontan circulatory setup created at Stage III (which is what Dr. Rodefeld’s impeller pump is trying to rectify), and (b) problems which are initiated by the long interval between Stage II and Stage III.

The time interval between Stage II (typically accomplished by 6 months at the latest) and Stage III used to be 6 months. The Stage III is accomplished using one of two approaches – “lateral tunnel” or “extracardiac conduit”. The lateral tunnel is mostly one’s own tissue, so it can be done at any age….it grows as the patient grows. So, it was frequently done at about 12 months of age.

For the last 5 to 8 years, however, the fashion among surgeons is to implant an extracardiac conduit (“it’s easier to do, we think it’s easier to get symmetrical flow to both pulmonary arteries, and we don’t have to touch the patient’s atrium”). If you perform this style operation at age 12 months, you have to use a 14 mm Gore-Tex tube. Since the diameter of an adult vena cava is typically ~20 mm, a 14 mm Gore-Tex tube will have to be replaced later on. So what surgeons decided to do is to wait until the pt is ~3 or 4 when the larger size of the pt will allow the use of a 20 mm Gore-Tex tube.  There hasn’t been much pushback from cardiologists because the prevailing view is that the Fontan circulatory setup is an unmitigated disaster, so the longer you can wait to perform the Stage III (Fontan), the older the pt will be before needing a transplant. [Note: I am not persuaded that we yet have a sufficiently rigorous understanding of how the Fontan circulatory setup affects individual patients to deem it “a disaster”, and we certainly have only begun to explore ways of optimizing the performance characteristics.]

The problem with this approach is that during the time a pt is maintained with Stage II, major aorto-pulmonary (A-P) collateral arteries develop. Between 10 and 50% of the blood ejected by the Ventricle winds up in these A-P collaterals (think of them as many tiny BT shunts….individually they don’t look like much, but add them all together and they divert away a significant percentage of the blood the ventricle is trying to pump out to the body). We don’t know what  the stimulus is for their growth; it may be the lower-than-normal pulmonary blood flow inherent in Stage II, it may be the lower-than-normal pulsatility of flow in the pulmonary arteries inherent in Stage II; etc.

The volume overload the A-P collaterals place on the single ventricle  frequently injures the ventricle. One might argue that it’s possible that a single ventricle pt’s lone ventricle isn’t normal and that it’s that inherent abnormality that we have to worry about.  We can’t settle that argument yet. However, even if it is abnormal to start with, we really shouldn’t be doing things to it which will just shorten its effective lifespan.

We also have no idea what the A-P collateral flow is doing to the pulmonary microvasculature over a 3-year period (between age 6 months and age 42 months). The two most important determinants of the cardiac output after Stage III is completed are: how pristine the pulmonary vasculature is; and the performance characteristics of the Ventricle.

That’s where the Yale group’s experiment comes in. You can theoretically do this style of Stage III  at age 12 months, since it’s essentially a pt’s own cells seeded on to a bioabsorbable scaffold. It should grow as the pt grows. Moreover, using MRI and computational flow dynamics, you could produce a computer-designed “optimized” 3-D conduit shape (i.e., lowest power loss, highest chance of distributing flow symmetrically to the pulmonary arteries). Then, if you had a way of fabricating the scaffold the way people are now using 3-D printing to fabricate all kinds of complex components, then you could do the Yale procedure with a personalized scaffold rather than just a standard straight cylindrical scaffold (as shown in their video).

 

Four Optimistic Reader Letters

I have received many letters about Immortal Bird and wanted to share these four because they all have something positive or even humorous in them. Enjoy and have a nice weekend.

 

Letter 1

Hello! I work with cinema in São Paulo, I was sent your book about Damon by a publisher here to evaluate and I was touched by your honesty. I watched powerless as my grandma passed a few month ago and she was one of my pillars, so I can relate a bit with the sensation of lost you’ve felt. I’m sure he would be very happy with it and it was an honor to know him through your words! If you decide to visit Brazil don’t hesitate in write for tips!

Letter 2

I apologize for writing you at your work email address, but I had to thank you for your beautiful book. I stayed up half the night finishing it, and woke up a different and better person because of it. Thank you for sharing your Damon with the world.

(P.S.–I registered as an organ donor for the first time today.)

 

Letter 3

Mr. Weber,

 

I have just finished reading Immortal Bird, and while I have read many books that have touched me, I’ve never felt the desire to write the author until today.

Your touching story brought tears, and a feeling of familiarity .  You see, my own little bird was born on July, 11, 1988 just a month before your Damon was born.  XXX  was also a frail little thing who came into the world with her own set of troubles.  She was born 9 weeks early weighing only 2 lbs 6 oz. and we left the hospital six weeks later with a four pound little girl who fought like a lion to survive.  While XXX  was learning to walk, and Damon doing the same my father was on the transplant list.

Back in 1999, being on the transplant list was extremely uncommon.  In fact, my father was turning 50 soon and they didn’t want to give him a heart because he was considered ‘old’ and it might be a waste.  My mother begged, he had three children, two grandchildren and needed to live.  Our lives were ones waiting for the phone to ring or the pager to buzz.  After what seemed like an eternity, the pager buzzed and the heart was there.  My father had his transplant at xxx.  Our lives became ones of surgical masks, hospital infections and blunders and pills.  My father was among the lucky.  He was told he would have five more years and then would most likely die from the effects of steroids.  After nearly ten years of bypasses, pacemakers and limitations, my father finally soared.  He returned to his love of hunting and fishing and was able to see four of his grandchildren arrive before he would die (15 years post op) from liver failure as a result of the steroids.

It was a time of biopsies, Dr. appointments and needing to be close to xxx Hospital.  It was a hard time, but one that we would not have given up for anything.  I only wish you would have had that time with Damon.

Through your words, I was transported back to the signs and sounds of the hospital and remembered how we had to fight for the right to live.  A fight that your family can be proud that they fought the battle.

My own little warrior xxx( short for her age due to her low birth weight and issues surrounding that) thrives today and is a fighter to the end.  Your story made me appreciate the battles we have fought and where we are today.  Her brother is a thespian through and through and I have spent many hours at the community theater.  He has taken those experiences and is now studying in xxx to be a Director (a path perhaps Damon would have pursued?)

While you’re probably wondering what my story has to do with you, I guess I just wanted to say thank you for sharing Damon with the world as I feel a kinship with you and what you’ve been through.  Though I haven’t had to walk through the shadow of death with my children (something that I can’t even imagine the depth of the grief that would be felt) I was able to experience it somewhat through your story.

And while I’m saddened by your loss, I am thankful for the families who make the sacrifice to give up organs while they are going through their own private hell.  Without them I would not have had my father, he would not have seen my lioness, and you may not have had extra time with Damon.

Thank you for writing a story that honors Damon, transplant families and love that will fight to the end for what is best for their loved ones.  When I look at xxx with her blue eyes and small stature I’ll say a prayer of thanks that she is still with us, and one for Damon and his family.  I’ll also remember to thank the families who gave a heart to my dad and to Damon.  Without their sacrifice we would not be the same.

Thank you!

 

Letter 4

Hi, I just read and review your book, Immortal Bird, on Amazon.

It was a fantastic tribute to your remarkable son, and a realistic portrayal of our medical professionals.

I just saw a picture of your Damon – on the Damon Weber prize website, and he looks fantastic in that picture!  I hope your book has a picture of him in it, so people can see his smiling mug!

 

 

Patients vs. Profits

An excellent article  in the New York Times, Drumbeat on Profit Takers, that profiles the crusade of Arnold Relman and Marcia Angell, two former editors of the New England Journal of Medicine, against for-profit medicine.

“We should not allow the medical-industrial complex to distort our health care system to its own entrepreneurial ends,” Relman writes; medicine must “serve patients first and stockholders second.” This is the crux of the issue. The health care system has lost its way because it has forgotten that medicine is about patient care first and foremost, and everything else must be subordinated to, and designed for, that purpose.

Relman decries  a “market-oriented health care system spinning out of control” with commercial forces influencing doctors’ judgments and manipulating a credulous public.  He is particularly  critical of commercial insurance and drug manufacturers. I would add to that list private equity firms which have taken over many hospitals and negatively influenced non-profit hospitals as well with their emphasis on the bottom line. Many of the biggest and most storied nonprofit hospitals–the ones you don’t want to hear anything bad about–are run like modern corporations with CEO’s who are compensated for ever-growing revenue margins rather than patient outcomes. Even the most dedicated and best-intentioned physicians, and they are legion, cannot help but be affected by such a for-profit culture.

I believe Damon was denied the appropriate standard of care by negligent practitioners operating in a medical-industrial complex that places profits ahead of patients. We need to restore health care to its true nonprofit origins and to its focus on the individual patient. I would not have had to write Immortal Bird–or to start this blog–if the system worked.

In Relman’s ideal health care system, the New York Times reports, “doctors would be salaried and organized into large multispecialty group practices similar to the Mayo Clinic and other private clinics; care would be delivered by a single-payer nonprofit system, financed by the taxpayers. “You’d save an enormous amount of money,” he said, much of it by eliminating the private insurance industry, “a parasite on the health care system.”

Do you agree with his solution? Do you have a better one? Or do you, like some critics cited in the Times article, disagree with this assessment of the problem?

Damon with Horses

Damon with Horses

This photo was taken at the LA Equestrian Center the day Damon and I went riding through Griffith Park with the world champion bull rider Gary Leffew. We had an off day while Damon waited to see if he’d get a part in the HBO series Deadwood. The photo and the adventurous ride is described in Immortal Bird.

A Mother Grieves for Her Son

I just received this affecting letter from a mother about her son. Her precious boy had certain similarities with Damon and her tale moved me deeply. I don’t know how many stories like this are out there but I imagine it’s more than we think.. I invite readers of Immortal Bird to share their unique stories.

The boy’s mother gave me permission to quote her letter but asked that the names be changed so “Joseph” is not his real name and I omitted her name as well. I also obscured a few other names to preserve anonymity.

 

Dear Mr. Weber,

 

     I wanted to thank you for writing your book about your son’s life.  There were so many similarities to our son’s story in your telling of what your family experienced with his illness. 

     Our son, *Joseph was born with a single ventricle as well.  He was born in 1978, when there was very little information that I could even find on his condition.  He had a Blaylock-Taussig shunt done at birth, and a Modified Fontan at age 10. At 11, we almost lost him, when he stenosed a couple of the vessel connections that had been done xxx.  He was in heart failure and pulmonary edema and we were losing him when his pediatric cardiologist got the FDA to approve an emergency insertion of a stent at xxx.  Stents at that point had only been put in pigs and 2 or 3 other humans.  *Joseph came out of that so much better.  The doctors had never been able to separate his circulation completely, and he always had somewhat compromised oxygen levels all during his teen and twenties.  

    * Joseph, like your son, loved to act and was in plays, and musicals while in school.  He had a dry wit and there were so many family dinners when I would nearly choke to death he was so hilarious!  He was a great friend and kept a smile on his face always.  He was so incredibly brave.  He finished high school, and then went on to University.He graduated with his degree in Economics.  He did an internship at the state legislature with our local state senator while in his senior year of college.  He loved it, but saw that there was so much that could be done better in government.  He decided to go to law school after graduation. xxx had managed the major problems with his heart ever since he was 11, so he went to xxx for school where he could be near those doctors.  He graduated from Law School in May of 2007.  While studying for the bar in June, he had an arrhythmia in the Law School library.  The team there resuscitated him and got him back.  He was sent to xxx, but would eventually not survive a redo of his Fontan surgery a couple of week later.

     When you said in your book that you lose your sweet son everyday, I know exactly how you feel.  I have gone through all the what if’s for the last 4 and a half years.  There is not a day that goes by that I do not wish things had turned out differently.  We were I guess lucky to have Joseph for almost 29 years, but it doesn’t feel lucky.  My husband and I had become good friends with him.  It was more than being a parent.  He was such a wonderful person.  Joseph, had two younger siblings.  There were 6 years between Joseph and his sister and nearly 10 between him and his younger brother.  Joseph  as he got older, became the third parent in many ways to them and they looked up to him so very much.

I wish I could have written a tribute to Joseph, as you have done for your son.  I will have to leave that up to his sister or brother.  Until you have experienced the nightmare of trying to save your own son, you cannot possibly understand what you had to go through.  I understand and my heart breaks for you and your family.

Sincerely,

 

Surprising reader response to Immortal Bird

I recently received my fifth or sixth reader letter with a similar, surprising and ultimately gratifying response to Immortal Bird. The letters have come from both men and women in their child-bearing and child-rearing years. The first few letters came from women friends. Both asked to read my book. One was pregnant and about to give birth and the other was trying to get pregnant, so I was unsure whether this was the best time for them to read Immortal Bird. But they insisted and I gave them each a copy. In their response, they both told me that my book, despite its subject, had reaffirmed and even revitalized their desire for motherhood.

More recently, a male friend sent me this response:

“…I will mention one more thing because I think it applies. Since I moved out on my own, single for the first time in my adult life, I have expected that this is how things would stay. My friends are getting married and having kids–eight weddings and five births in 2011 alone–but I have shut off these hopes. Strange as it may sound, given all you’ve suffered, but the one thing that’s made me reconsider that is your book. To find the room inside yourself for such boundless love, even if it means unimaginable pain, seems to me the fullest way of being alive. Anything else is a shadow of that. You make me want to be a father. That’s something I thought I would never want again. And I think you’re the kind of father that I hope one day I could be. Thank you for that example, as a writer and a man, and for giving me the chance to read this towering book.”

New Heart Pump for Single Ventricle Disease?

Today I received this letter from a Dr. Mark Rodefeld, Associate Professor of Surgery at Indiana University School of Medicine. He says he has exciting new  ideas for dealing with single ventricle disease, such as my son had. Although my foundation does not fund this kind of work (his question number 1), I thought I should help to increase  awareness of his work (his question number 2)  just in case it may lead to impovements in the lives of children and adults with this disease:

Dear Mr. Weber,

I recently became aware of your book, although I have not yet read it. I am a congenital heart surgeon, and so I am intimately familiar with the experience you have been through.

I spend a great deal of my time dedicated to research to address the problems of single ventricle heart disease. Thus, I am contacting you for several reasons:

 

1)      Alfred P Sloan Foundation may have some interest in considering support of my work.

2)      You may have interest in increasing awareness of my work as a way to improve the lives of children and adult afflicted with this condition.

My research is challenging on many levels. It is ‘unconventional’, ‘paradigm-shifting’, and ‘transformative’, i.e. high risk, high impact. It involves the development of a blood pump to place a right ventricular power source back into a circulation that lacks one (Fontan).

If accomplished, it would restore normal 2-ventricle physiology to people who have only one functional ventricle. This is a Holy Grail in structural heart disease, and this technology would impact medical care tremendously.

 

 

 

 

 

Letter of Appreciation with New Idea for Global Heart Network

I received this letter from Annabel Lavielle who I met in Washington DC during Lobby Day for Congenital Heart Disease. Annabel is the mother of a CHD survivor and has developed an innovative idea for improving cardiac care in the developing world. Anyone who is interested may contact her directly:

“I read your deeply moving and profound book’ Immortal Bird’ last weekend.  It is a powerful and courageous account of the strength of love and faith, and however unjust it may be for a life tragically cut so short, Damon lived his life to the full thanks to a loving and wonderful family, that having read the book we feel we know a little.

Thank you so much for all of us for this powerful testament.

We are developing a technology platform to reduce the mortality rate of heart disease in the developing world, see www.globalheartnetwork.net.  The GHN is designed to serve stakeholders working in the field by creating conditions for collaboration and innovation. The platform allows the sharing of data & information, best practice and new standards of care across the developing world.  The essential goal of the GHN is to effect change in reducing the global inequality in access to cardiac care through collaboration that will change the way cardiology services are delivered.

To meet this goal, the GHN is working to improve cooperation and collaboration; implementing effective and feasible strategies; and informing efforts via the technology platform. The first phase Alpha is the creation of a web based and mobile platform.

Best wishes

Annabel

              

Annabel Lavielle

President, Founder

Global Heart Network Foundation

Phone (US): +1 415.832.0653

Skype: annabelgreenlavielle

www.globalheartnetwork.net

Post Navigation

Seth's Blog

Doron Weber on Immortal Bird Aftermath

Doron Weber on Immortal Bird Aftermath

The WordPress.com Blog

The latest news on WordPress.com and the WordPress community.