Being Your Child’s #1 Advocate & Learning From Patient Families: Reader Letters
Two letters, one from a patient family who met with a similar loss of faith in the medical establishment as described in Immortal Bird–and had a similar, determined response re taking personal responsibility for their child’s care–and then a thoughtful letter from a sensitive but restrained physician who understood the value of Damon’s story , and stories like Damon’s told from the patient family point of view, for practicing residents and fellows.
Patient Family Letter
I am a parent of a child with tricuspid atresia. Our daughter recently had the Fontan procedure two months ago and, at 21 months, she is doing great.
My wife and I just heard about your book on Science Friday. I haven’t read it nor do I have much to say in this email other than I am very excited that you have written the book. From the Science Friday transcript, both my wife and I saw many similarities in our approach to our daughter as you had done for your son. Soon after she was born, we quickly lost all faith in the medical establishment, doctors, especially nurses. After our observations of complete misunderstandings among the doctors and nurses and especially the lack of communication with anyone involved in her care, we were really frustrated and continue to be with the medical care for our daughter. I sincerely hope that more parents of kids with heart defects will read your book and recognize the importance of being the #1 advocate and medical caretaker for their kids with special hearts.
Dear Mr. Weber, I am a pediatric oncologist at Memorial Sloan Kettering Cancer Center. A friend of mine recommended your beautiful book about your courageous son. I for the first time while reading a book on my iPad literally forgot I did not have a real book in my hand and tried to turn the page. I will ask my residents and fellows to read your book so they can understand what families go through and how physician’s speak and care for their patients and families. I am so sorry for your loss.