Doron Weber Introduction of Immortal Bird Postscript
Exactly one month ago today, I published Immortal Bird: A Family Memoir (Simon & Schuster) which is a celebration and an account of the last four years of my son’s life.The book has been widely reviewed and has generated many beautiful and touching letters from readers.
Three weeks ago when I was scheduled to do my first reading at Bookhampton in East Hampton, NY, one such reader, Alicia Brzycki, wrote and asked if I would consider joining her and two patient support groups, the Adult Congenital Heart Association and Mended Little Hearts, for Lobby Day in Washington DC. These two organizations had been instrumental, along with the Children’s Heart Foundation, in passing the first-ever congenital heart disease-specific legislation, the Congenital Heart Futures Act , which mandated more research and better data collection for congenital heart disease (CHD). CHD is the most common birth defect and kills more children each year than all the childhood cancers combined yet very little basic research has been done on it and it is impossible to get any good data. Two million Americans live with CHD and my son died from it, so I couldn’t think of a better cause to advocate for.
I went to Washington DC, met the group’s talented leader Amy Basken and did a brief reading at an evening reception before visting the offices of three Congressmen: Senator Charles Schumer (we met with his legislative correspondent, Veronica Duron); Representative Gary Ackerman (we met with his legislative director, Jared Frost); and Representative Maurice Hinchey (we met with his legislative assistant, Amy Kelbick). All were generally supportive and well-informed and treated our 5-person delegation respectfully. We will see how good they are on follow-up regarding funding for CHD for data collection (via the CDC) and research (via the NIH).
What I most took away from this experience was the personal stories of the 100 advocates, many of them CHD survivors or parents of survivor children. No matter what our differences, we all shared a searing and life-altering event or series of events, since CHD is a chronic condition. I was also struck by a senior cardiologist who came over and said she wanted to meet me because she was reading my book–as were about half the 26 cardiologists in her unit, all of who were avidly discussing it. She said they did not share my point of view–my son died from a post-transplant infection and I have a lawsuit against the hospital for its mishandling of his case–but they appreciated my writing it. They felt that a big part of the problem was communication between doctor and patient and they could do a better job on that score.
So I have started this blog for many reasons but foremost among them is to invite patients and their families and members of the health care profession to discuss their differing perspectives and feelings about congenital heart disease specifically and current medical practice generally. I hope to improve communication and to further mutual understanding and to that end, I invite anyone to contribute.
I would also like to share some of the moving letters I have received and to enage the subject of grief and mourning. On March 28 I will be one of six panelists on a Summit, New Jersey panel sponsored by Interregnum “When the Bough Breaks…Parents Moving Forward in Their Journey Through Grief.” This is a subject that does not receive enough attention and openess.
Finally, as a writer, I would like to keep a record of my book’s journey post-publication and to discuss my own artistic goals as well as commenting on the book’s reception from the public and the critics. I reserve the right to review my reviewers and to set the record straight on any number of related subjects.
Thanks for plowing through this long first posting.