–Today, as former President Bill Clinton addressed the first Patient Safety Science and Technology Summit in Laguna Nigeul, Califrnia, I thought of the amazing Helen Haskell, founder of Mothers Against Medical Errors and a moving force behind the summit.
–It was Helen who first got me involved with this issue when she wrote me a letter last summer:
Dear Mr. Weber:
I have recently read your book, Immortal Bird
, and was deeply moved. I, too, lost a son to medical error. Lewis was also a shining light, also an actor. His story is online at www.lewisblackman.net
I have spent the 12 years since Lewis’s death working as a citizen advocate in patient safety
, mainly because I did not have the courage to stare into the abyss of my loss the way you have done. I have worked with doctors, hospitals, and policymakers and like to think I have done some good. Next week I am giving a talk at the Quality Colloquium at Harvard and would love to include a picture of Damon
in my presentation. I have the one of him standing beside the horse wearing a Brown tee shirt, if that is all right with you.
I appreciate your candor in telling Damon’s story. His fate is very disturbing, not just because of the unspeakable loss, but because it is so utterly typical. I have notes I took on that section of your book, thinking of other families I have known who have been treated in exactly the same way. Most distressing is the account of the hospital staff calling security when you tried to get help for Damon. I have known two other families to whom this happened. In both cases the patient died.”
–I was impressed by Helen’s personal story and her dedication to patient rights and I gave her permission to include Damon’s photo in her talk.
–Two weeks ago, Helen wrote again to tell me about another opportunity to improve patient safety.
“I am getting together a small group of stories of patient harm for the Patient Safety Science and Technology Summit that will take place in Laguna Niguel, California, in about two weeks.” Helen wrote. “This is an important conference in which stakeholders from various areas of healthcare will be brought together to commit to collaboration on immediate solutions for pressing patient safety problems. If you are interested, I would very much like to include your family’s story in this group. ”
–Helen said that all she needed was a photo and summary of my story, which would be posted on the wall at the conference.
–I agreed and wrote Helen this summary, which I sent along with a photo.
Damon Daniel Weber, born 8/8/88 with congenital heart disease, had two successful surgical repairs by the age of four, and thrived into his teen years. A top student at one of the nation’s leading magnet schools, he was a theater director and actor who made his national television debut on the HBO series, Deadwood. He also skied, sailed, and rode wild horses with a world-champion bull rider.
After developing complications related to his original repair, Damon underwent a heart transplant in January of 2005, at age sixteen-and-a-half. The transplant was successful, and worked even better than expected. Damon returned home after 30 days with an excellent prognosis. There was jubilation in the family and among his friends.
But unbeknownst to Damon or his family—though his cardiologists knew—Damon’s heart donor had tested positive for Epstein-Barr virus (EBV), known as “the bugaboo of heart transplants.” But no treatment was given to Damon, no preventive measures of any kind were taken, nor were any warnings provided to Damon or his family. When Damon started reporting flu-like symptoms and other signs of EBV infection several weeks after returning home—cough, fatigue, fever, loss of weight, mental confusion—his cardiologists dismissed them, and said there was nothing to worry about. When the symptoms worsened and his family brought him in to the emergency room, the cardiologists still insisted on treating him for a full course of rejection, despite the fact that he tested negative for rejection and had every symptom of infection.
It was like stepping on the accelerator instead of the brake.
The treatment for rejection—suppressing the immune system to stop the patient from rejecting the heart—is the opposite of the treatment for infection. With infection, the treatment is to reduce the immune suppression so the patient can fend off the infection with natural defenses. Damon’s head cardiologist, the unit’s medical director, knew what the right treatment was: a year earlier she had co-authored a book chapter which stated that reduction or temporary cessation of the immunosuppression is the proper standard of care for a patient in Damon’s condition.
So not only did his cardiologists fail to help Damon, they actually hindered him from fighting back with his own strength by not following their own protocol. By the time his cardiologists had correctly identified EBV as the cause of his illness, it was too late. Damon’s unchecked infection had turned into a full-blown case of post-transplant lympho-proliferative disease (PTLD), and he died a terrible death, his organs ravaged from within.
Following his death, Damon’s family brought a lawsuit against the hospital and the cardiologists. After failing to produce his relevant medical records for three years, Damon’s chief cardiologist testified at her deposition that his records had been shipped to an off-site storage and “could not be located despite all best efforts.“
In 2012, Damon’s father, Doron Weber, published a critically acclaimed memoir about his son’s life, Immortal Bird: A Family Memoir (Simon & Schuster) but to date the lawsuit remains unresolved and Damon remains gone.