Immortal Bird Postscript

Doron Weber on Immortal Bird Aftermath

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.

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15 thoughts on “Doron Weber Introduction of Immortal Bird Postscript

  1. Thanks Doron. I’m quite excited to read your book, I’ve heard nothing but great things. I’m a CHD parent, but didn’t know about my daughter’s CHD until she had passed away, so I’m extremely interesting in improving screening. I look forward to the discussions you will host in this space and wish you lots of luck with your new blogging adventure!

    • Thanks Kristine. Screening is critical including with a pulse oximeter right after birth. I cannot imagine your pain and bewilderment at not knowing of your daughter’s CHD. Knowledge helps on so many levels.

  2. Tricia on said:

    I am very sorry for your loss. I have not read your book this post was the first I have heard of it but I am grateful that you and others are lobbying for CHD issues. I am a member of Mended Little Hearts of Phoenix and we are interested in creating a Mended Little Angels program to address the needs of families who have lost their CHD child. As you mentioned there is not enough attention paid to families suffering the loss you have. I was wondering if you had any ideas of where to start or what would have been or would still be helpful to you from such a group. Any ideas would be greatly appreciated. Best of Luck with you book and your blog.

    • Thanks Tricia. The first place to start is to let people know you are out there. There are so few support groups that word will quickly get around. Just having a regular, safe place that is dedicated to healing and to meeting other people who have suffered similar losses is empowering. I would also charge on a sliding scale so that no one is turned away.

  3. Doron, thank you. My husband, Caleb Lihn, completed your book a few days ago and it’s next on my reading list. Being a mom to 23 month old, Zoe, a hypoplastic left hearted warrior, my reading time is sparse. Needless to say, I look forward to reading your book and seeing the CHD community embrace it – as a tool to empower themselves. Myself, along with 8 other HLHS moms, founded a non-profit in 2010 to provide support, empowerment, reassurance and hope to newly-diagnosed HLHS families. Part of that mission includes educating parents and encourages constant communication with their child’s providers – the best line of defense is often (or always) the parent. One of my current goals is to inform cardiologists, nationwide, of the importance in becoming proactive providers as opposed to reactive. Reactivity is often too late for our children.

    Thanks again for bringing CHDs and all that this diagnosis entails to light with your book.

    Warm regards,
    Stacey Lihn
    President, Sisters by Heart

    • Thanks Stacey. I received Caleb’s eloquent and moving letter and responded to him privately. Good luck with Zoe the Warrior and feel free to post a link to your organization on my page and tell people about whatever is on your mind. I could not agree more with you about proactivity.

  4. Thank you for the kind words. It was certainly a gift to have you join is in Washington and share your story with so many. I look forward to following and perhaps taking part in your “post publication” journey.
    Much Love,
    Amy

    • Thanks Amy. You did a truly extraordinary job in organizing Lobby Day and managing all of us and our needs with such diligence, tact and grace. We are very lucky to have you, as are your three children. God bless.

  5. sean pietras on said:

    Doron I was 1 of the advocates that was at lobby day I am looking forward to getting your book. I lost my son 8 years ago to an undetected heart defect that we had no idea he had. Look forward to reading your book.
    Sean

    • Thanks Sean. Glad you turned your loss into positive action. Eight years is nothing. Damon will have been gone for seven years by the end of March and it feels like yesterday.

  6. A beautiful memoir of a remarkable life, cut short. Damon will live on in immortality thanks to Doron’s magnificent tribute to his lion-hearted son.

    http://www.amazon.com/review/R1J3P61TX1RULW

    http://brumspeak.blogspot.com/2012/02/immortal-bird-doron-webers-tribute.html

  7. Doron
    It was a pleasure meeting you at the Congenital Heart Lobby Day and hearing you speak! We spoke briefly at the Congressional Briefing. You met so many people you probably don’t remember me but I shared that I am an adult CHD survivor and that I too have lost child (although not to CHD).

    Anyway, I have finished your book and was honored to get to know you and your family and especially Damon through your writing! Thanks you for sharing yourself and Damon’s story in such an inspiring way.

    I look forward to staying in touch via this blog!
    Warm regards
    Paula
    ACHA Member Services Manager

  8. Richard Horowitz on said:

    I am sorry for your loss; and inspired by the way you have handled it.

  9. Alicia Brzycki on said:

    Hello, Doron. Glad to read your blog, which I just happened to find.

    I would appreciate hearing your panel in Summit March 28, as this topic of grief has always held a particular place in my own heart.

    You are providing a powerful community service, writing like this, sharing your profound voice, and we all stand to benefit. Damon, I can’t help but think, is guiding your hand, your own very bright shooting star in the heavens.

    alicia brzycki

  10. Sue Pelosi on said:

    Hello,
    I look forward to reading your book. My almost 25 year old daughter was born with complex CHD. Her doctors at Yale told me that she may eventually need a transplant but right now things are holding steady via various interventions and medications.
    I am so pleased that CHD patients and families are becoming a unified voice to advocate and to educate. When I was a new mom, there was not much help. I resorted to buying books intended for medical school students to learn more about CHD.
    Thank you for sharing your story,
    Sue Pelosi

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Doron Weber on Immortal Bird Aftermath

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