Who are the watch dogs? Who will the scientists be accountable to? Science has no moral conscience. It does not know that if we interfere with God's will, we lose something precious in the process. We must all be accountable. Dr. Chris Cunniff ( a man I respect greatly from the University of Arizona medical school) summed up what he had heard. "We are awash with data. What we lack is knowledge and wisdom. Science is conscienceless. It gathers data, but it doesn't make decisions. It doesn't take in the moral or cultural dimensions of the patients." He spoke of prejudging a patient, and then being "diminished in a significant way" as this man asked him why he judged him that way. He spoke of science having a power of it's own. He asked," But are we doing it in an appropriate way? We want diseases identified and we have the tools that allow us to identify kind of groups. We need to offer the kinds of care that will be most helpful for them. (the patients) Acknowledgment of diversity is important. It needs to be an inclusive process, genetic care that produces a dialogue of those it involves. We need true social justice for everybody We do not want certain groups to benefit at the expense of others." He spoke again of power. He asked, talking of us..."Will their voices be heard? There are issues of reasoning. Who are the researches? " He also noted, " There is cultural mistrust within communities. Because we don't know about it doesn't mean it doesn't exist. How can we have a social justice agenda for everyone? Science is not morally neutral." (Chris Cunniff, MD Director of Dept. of Pediatric, Section of Medial and Molecular Genetics, University of Arizona Tucson, Arizona) ---------------------------------- Listen to what my friend Kitty Coons who is working on her doctrinal thesis, feels about this conference. "Dear Gina, It was so nice to see you. Thank you so much for letting me know about the conference. It was, in some ways sadly, very helpful to my research. My research is telling me that the ethical and medical people are using the money that they are supposed to be spending on ethics to sell their project - clearly, simply. Those who stand to benefit the most are big multinational pharmaceutical, computer, and insurance companies. I learned as much at the 'lunch tables' as in the conference itself. For example, I was talking to someone about how some companies will profit tremendously even though taxpayers are putting 3 billion in this (and did anyone ask you?) There was a young female MD at the table and she summed it up by saying "Who cares who makes a lot of money, as long as we can eliminate disabilities?" Pretty sad. They aren't listening to you, Mark (Trombino), to the people who are speaking with mulitcultural voices. They're just trying to let you think they are. Sorry, but that's the picture I see. It's a crisis all right, and guess who profits from the "Opportunity". Well one thing, it has renewed my commitment to fight for diversity. Keep in touch! Love Kitty." .................................. Can I tell you my life is nothing like I thought it would be when David was born. We play by different rules. But ours is a good life. My dear friend Kris Holladay spoke at the conference as well. Her daughter Kari, had the genetic disability called Trisomy 18. In addition to be severely handicapped, babies born with this disability do not usually survive the first year of life. She said this project had been likened to a bull dozer, plowing everything in it's path. She said her main concern was "Who is driving the bull dozer?" Kris was the one person who impacted me the greatest when David was born. Please permit me to share with you some insights Dr. David H.. Beyda (Director of Pediatric Critical Care unit at Phoenix Children's Hospital) wrote about her in 1988... REFLECTIONS - 1988 Some months ago I had my wrist well and truly slapped by a 10 years old girl with Trisomy 18. Kari H. was admitted with vancella encephalitis with little hope of recovery. The fact that she had Trisomy 18 immediately 'labeled' her as someone not in need of aggressive therapy and, therefore, received care that allowed her comfort, but far less than the mega -aggressive approach we would have given to a 'normal' child. At the time, it seemed like a good plan. Meeting Kari's mother for the first time, I prepared myself for the gibe I was about to receive. I expected to meet a mother with a fixed expression on her face that said, "Don't even try to imagine what I've seen or been through in the last ten years." Truth be told, she was delightful and I was embarrassed. She was sincerely cordial and attentive. She placed no burden on me to accept the fact that Kari was special because she has outlived the medical professions' prophecy of an early death. She asked me rather to insure Kari's comfort and dignity. She expressed a foresight that impressed me enough to adopt her unique philosophy. Lest I begin to sound rather smug and righteous about all this, I assure you , I intend to be the contrary. When Kari was born, her parents were told that she would not live more than a few days. The family grieved and waited. Kari's mother recounts the rest. "We waited, day after day, for Kari to die. She surprised us after the first week when she became easier to handle and feed. We gradually began to accept that Kari was in fact going to live, and we should make the best of it." Stroking Kari's forehead she paused for a moment. "We ... I, have lived with Kari for the past ten years with the same philosophy ... that everyday Kari lives, is a bonus ... a gift ... for which we are very thankful." Kari's family incorporated her into their daily lives. With special effort, they were able to achieve a comfortable norm. Rather than trying to find ways to change Kari's shortcomings, they strived to find resources that would allow Kari to reach her potential, no matter how small it was. It was critical for them. It was critical for Kari. At the time of her death, Kari was wheelchair dependent. She required constant care and feeding. She has little if any verbal communications skills. She attended a special-needs school, and recognized family, friends, and teachers. She interacted with smiles and tears. Her quality of life was never in question. She participated to her fullest potential. Her parents never denied her existence. They never denied either, her condition. This was the only attitude they could realistically adopt. Few parents, like those in their situation, ever find the commitment to achieve it. They become mired in emotions that distract from their ability to perhaps appreciate the fact that their child is alive and part of them. They lose sight of the family structure. Kari's parents were just as unique as Kari was. And that's why they worked so well together. When Kari died, her mother quietly held her. Her bonus time had ended. In the pursuit of truth, I discovered my own shortcomings. I was ... am , quick to judge and label. Perhaps because intensivists must react quickly with little time to reflect on the potential shortcomings of any intervention. I began to realize that I will never be able to appreciate what my patients and their families feel unless I find new wisdom. Looking to Kari's mother I found some. "Kari didn't die because she had Trisomy 18 did she? She died of chicken pox." In her own way she had made her point, subtle, yet concrete. Even by her death, Kari had refuted medical expectations.
I realized that quality of life is simply the ability to give and receive love. No more, no less. I reflect on this as I continually transition to maturity as a physician. There's really no second chance in this business. Perhaps you've heard it said before ... life is not a dress rehearsal. "Truth has no special time of it own. It's hour is now - always." Albert Schweitzer (1875-1965) Reprint of an article written in "KIDSAVERS" Volume 4 Number 12 December 1988 David H. Beyda M.D. Pediatric Critical Care Phoenix Children's Hospital Phoenix, AZ ................... Ironically after that I attended the conference I attended a play called "And Then They Came for Me." It was the true story of two holocaust survivors who were friends with Anne Frank. It touched me deeply. "And Then They Came For Me. " First they came for the Jews
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Each life is a gift. We must never lose sight of that. "Down syndrome" isn't what David is. He is so much more than that. How do I tell the world of a young man who is afraid of the dark, yet who will ride the most scary roller coaster ride ever, and yell with joy, as I am trying to keep from throwing up? He is a boy who let all the neighbors dogs out of their fences after watching the movie "Free Willey", feeling sure they didn't want to be 'captured' either. He is a young man who has a crush on "Brianne" a girl in his 8th grade class. At one of the last days of school Brianne, came up to me. She said, "Look what your son wrote for me." On this note, in his childish handwriting, he had written her name and his, and the word "love". She was so pleased. I choked with emotion. (A new love has come into his life, and it's not me. ) Twenty years ago this wonderful young man would not have been allowed in the same school as Brianne. There are things David does not understand but he understands love. He understands hurt. He understands kindness. I pray that those overseeing the Human Genomes Project will gain a moral conscience. And if they do not, I pray we as those who love someone who has special needs, will "speak out" for those who can not. From my heart to yours,
"We must be the change we wish to see in the world." Mohandas K. Gandhi "There are two kinds of people in this world; those you love and those you don't know yet." Anonymous