December 1988 – KIDSAVERS
Article by David H. Beyda, M.D.
Director of Pediatric Critical Care
Phoenix Children’s Hospital (Phoenix, AZ)
Some months ago, I had my wrists well and truly slapped by a 10-year-old girl with trisomy 18.
Kari H. was admitted with varicella 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 had outlived the medical profession’s 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 had little if any verbal communication 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 a part of them. They lost 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 just 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. In her own way she had made her point, subtle, yet concrete. Even by her death, Kari had refuted medical expectations.
I realized that the 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.
David H. Beyda, M.D.
“Truth has no special time of its own. Its hour is now – always.” ~ Albert Schweitzer (1875-1965)