Immortal Bird Postscript

Doron Weber on Immortal Bird Aftermath

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,

 

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2 thoughts on “A Mother Grieves for Her Son

  1. There is beauty in this kind of parental grief. There is sadness, of course, but also beauty. My deepest sympathy to all of the parents.

  2. “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.”

    According to a recent email I received from the NIH, over 35oo Americans died from CHD in 2007 alone, with between 36,000 – 40,000 new babies born each year with CHD. Older statistics had infant mortality rates as high as 8000/year due to CHD, but I’m glad to see a huge decline in more recent numbers.

    According to the CDC, 960 of new CHD babies will have Hypoplastic Left Heart Syndrome and per discussions with several pediatric cariologists the incidence for Hypoplastic Right Heart malformation (like what Damon and my son Liam had at birth) are equal in number to HLHS.

    This does not take into account those families who elect late term termination for babies diagnosed with these defects in ultrasound. I was given that option twice but declined both times as well as declining hospice care the morning after my son’s birth. The children who are placed in hospice care are included in the NIH numbers.

    So, each year approximately 1,920 new babies are additional possible Fontan candidates. Of course they are a large percentage of of the high infant mortality for CHD so we would expect something more like 70% of those children to actually make it to and through the Fontan with a small portion seeking and receiving neonatal cardiac transplant. My son was to be listed, but the 8 month wait made that impossible.

    To imagine the distribution of Fontan patients would take a pyramid shape with the oldest living Fontan survivors being the smallest population due to the long term mortality rates and significantly higher incidence of infant mortality prior to the mid 1990s.

    I have known three adults whose stories are similar to yours and your letter-writer’s and I miss them all terribly. I know a handful more adults living with Fontan circulations since the mid 1980s. The cohort born after 2000 is significantly larger, but that just means the risks and consequences then scale in proportion. We’re saving more of them sooner, but the answers we seek for long term survival are not yet available.

    This is why the congenital heart futures act is so important. This is also why the Children’s Heart Foundation has historically funded database initiatives. While a ten year NIH longitudinal Fontan study gave a good 7 institution sample, it is imperative that we have a robust national cradle to grave CHD database that tracks all diagnoses, interventions and the details of the types of surgeries performed so that real comparative analysis can take the place of guess work.

    For instance, when one of the doctors from the NIH study presented findings to my nonprofit support group (Hypoplastic Right Hearts) all their data showed a strong prevalence of LT Fontans which has it’s own complication rate, while every parent in the room had a child who had had or would have an EC Fontan, most with fenestration in the OR. It’s become a fairly common practice, but the benefits of this change are not yet know since the data sets cover its predecessor surgery. It’s all speculative and we don’t know what this shift means to the children whose Fontans were done differently from the cohort before them.

    Anyway, I can say that Hyoplastic Right Hearts, in the nearly nine years since I founded it has almost 900 members from across the globe. We’ve observed a self-reported mortality rate of approximately 15-18% and a small but growing trend of interventions meant to enhance Right Vent function rather than go Full-Fontan. We have had two medical conferences for parents with a pediatric cardiologist from Harvard at the first and a strong showing of the staff from Houston’s Texas Children’s at the second. We’re planning our 2013 conference for Southern California, and these are the types of things we look at and discuss.

    I also invite anyone who is compelled to fight Congenital Heart Disease to support the Children’s Heart Foundation, as it exclusively funds CHD research. I feel blessed to have attended the last two national medical advisory board meetings and observe the diligent and thoughtful stewardship of funds to fight CHD.

    Most kindly,
    Amanda Rose Adams
    President, Children’s Heart Foundation Colorado Chapter
    Founder, Hypoplastic Right Hearts
    Author of Heart Warriors, A Family Faces Congenital Heart Disease

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Doron Weber on Immortal Bird Aftermath

Doron Weber on Immortal Bird Aftermath

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