“Immortal Bird – A Family Memoir” by Doron Weber is the story of Weber’s firstborn son, Damon, who was born without a second ventricle on the right side of his heart which means there was no passageway to pump oxygen rich blood back into his lungs. A blue baby whose organs and tissues could not get enough oxygen, Damon underwent two open heart surgeries, the later called a “Fontan” which alleviated his problem by bypassing his right side altogether and pumping oxygen rich blood directly to his lungs.
The Fontan procedure allowed Damon to live a somewhat normal life until he started showing signs of a disease called PLE which stands for Protein-Losing Enteropathy that slowly develops in about 10% of patients who undergo the Fontan procedure for no known reason. PLE is a disease that does not allow the body to absorb the protein needed to keep the body’s organs working properly and is measured by a blood test that provides an albumin count. Victims of PLE fail to thrive with about 50% dying within 5 years and 80% within 10 years. The only cure is a heart transplant.
Doron Weber starts to notice signs of PLE when Damon is about 12 years old but is unaware of what PLE is at the time. Weber notices Damon is not growing, that his stomach is distended because the liver is swollen (due to protein leaking out instead of being absorbed), and that his son is tired. Told in the first person, the author goes through the painstaking process of trying to figure out what is wrong with Damon because no doctor has told him about PLE, ordered an albumin blood test or that this disease rears its ugly head in 10% of Fontan patients. When Weber finally realizes what is wrong with Damon, he knows that his son’s medical care really is up to him and not the doctors that are treating him. The doctors seem ready to treat symptoms, at times ignoring medical charts while Weber emerges as his son’s advocate, never accepting a single opinion and always seeking out alternatives and other medical advice before deciding on a course of treatment.
If there was ever a reason for getting a second opinion, doing research, and questioning every procedure, test, and prescription given to a patient, this is the story that will change the way the reader looks at the medical establishment. Although there are always two sides and sometimes more to a story, it’s hard to argue against medical error and neglect when a patient is given an overdose of a drug, prescribed medication intravenously only to have the orders ignored for hours, or classified as a low priority patient on a transplant list when the classification should have been more urgent. Damon Weber was the victim in all of these scenarios and if not for his father’s watchful eye, relentless search to find ways to keep his son alive, and unwillingness to give up, the book would have been a lot shorter than 358 pages.
By all accounts Damon Weber was a special boy – a talented and smart kid with a head full of red hair. A gifted student of the theater, D-Man as his father calls him, relies on the family that loves him to manage his care through the imperfect medical world so that he can live his life. His father, Doron is a doctor’s worst nightmare but a man I would want in my court if I were ill. Immortal Bird is a love story between a father and son and not since “The Road” by Cormac McCarthy has the depth of love been so strongly felt on the pages of a book. “Immortal Bird” is a heartbreaking story that will stay with you long after the book has been finished.