by Carole Bartoo
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| Photo by Steve Green | Brett Evilcizer was born with a "broken" immune system. It was a flaw that everyone knew would eventually kill him. His life was filled with needle sticks, repeated bouts of body-wracking infections and increasing disability. He was never able to attend school or play with other children or live a "normal" life… so, instead, he became a teacher.
Brett had an extremely rare genetic flaw that made it impossible for his immune system to make antibodies, one of the major defenses against infections. His rare immune system left him open to equally rare infections.
"Throughout my training we would anticipate Brett's blood tests because what was happening in his immune system was so fascinating and the results were so unique," said John V. Williams, M.D., assistant professor of Pediatrics in the Division of Pediatric Infectious Diseases. "That seems coarse, but he really was a kind of a celebrity to the infectious disease department and he seemed to be OK with that."
Even Brett's mother, Donna Evilcizer, clearly recalls the reaction of a Vanderbilt lab worker who met Brett for the first time.
"We were sitting at a ball game, and this person must have been sitting right behind us because when I said Brett's name, she tapped me on the shoulder and said, 'Evilcizer… are you any relation to Warren Evilcizer?' and I said that was Brett's given name. She said she knew the name Warren Evilcizer, that for years, she had been running Brett's labs … and everyone in her department knew him. His tests were always so interesting to run, a real learning experience each time. It was really like this person was meeting a celebrity when she met Brett."
And the lessons learned from Brett's body, and from the way he lived his unique life never stopped. Brett continually had students and residents and fellows and lab workers hanging around his hospital room, asking about his list of rare and unusual infections and how his body handled it all. Brett was always happy to answer, although by all accounts, he was no talker. He was a card player.
"He would sleep much of the day; like most teenagers, he was a kind of a night owl, but you'd see him up at 1 a.m. playing cards with his nurses. He loved to play cards," Williams said.
Brett always had video games handy that he lugged to Children's Hospital each time he was admitted with his own television from home, even after he lost most of his sight, he would play with the screen just inches from his face. Brett found ways to play with the other children in the hospital, and that's where people began to notice that he was teaching other lessons - life lessons.
"I remember him meeting a young high school football player who had cancer," Donna recalls. "He really hit it off with this young man, but the young man's mother was having a very difficult time dealing with her son's illness. I can recall after he had a bone marrow transplant, he had contracted an infection that was very serious and he and his mother were just closed up in his room, but Brett wanted to visit him. We went down to the gift shop to do a little shopping, and he grabbed a handful of bubble gum and said that was what he wanted to get for his friend. I asked him if he wouldn't prefer a toy or game, but Brett insisted, so that's what we gave. Well that really brightened his day, it was exactly what he needed right then."
Added Donna, "The young man eventually died from his infection, but months later his mother sent me a card and told me that while her son's illness had seriously tested her faith, that Brett had gotten through to her. She said in this letter that she didn't believe she had ever seen evidence of God, until Brett walked into her son's room that day with that bubble gum in his hand. She said when she looked at Brett she saw who God really was through Brett's loving heart, and that enabled her to reconnect with her faith after her son's death."
For a boy who never could live a normal life, Brett somehow managed to make a deep and lasting impression - at all levels. The
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| Brett and one of his friends, Tyler Williams Photo by Tim Campbell | Children's Hospital became a home of sorts, where he could do his work: giving his gift of play and teaching other children to get over their fears of being sick. There are stories of people who sought him out, not just other patients, but doctors and nurses too, to see if in meeting him, they could find out how to face challenges in their own lives.
"I think he most impressed me with the way he faced fear and overcame it," said James Crowe, M.D., professor of Pediatrics in the Division of Pediatric Infectious Diseases. "For him, there was no escape from the pain of invasive medical treatment and procedures. He looked these necessary but unpleasant events in the face and said 'Let's do it.' Even in death, he saw it through with such courage. He was a mentor to me because we all face challenges and fears in life, and I have often thought that if he could face the major medical events in his life with bravery, any fear could be reduced."
Brett Evilcizer was 25 when he died in February 2007, ironically, not from an infection but from heart failure. He was one of the oldest patients at the Monroe Carell Jr. Children's Hospital at Vanderbilt. He had more than doubled the life-expectancy one doctor had given him early on, and he had survived cancer and more than 20 surgeries along the way.
Brett's mother, Donna, taught the staff lessons of courage and that caregivers of children with special needs must be listened to - to truly meet their needs.
"It meant so much to him that they let him stay at the Children's Hospital," Donna said. "At the age of 21, they were going to move him to the adult side, but that is so hard on long-term children who are not ready to make the transition. Brett always saw himself as a child, and he was so relieved when they let him stay at Children's Hospital. The medical director, Dr. [Arnold] Strauss, made sure of it and we were so grateful. Dr. Strauss will never know what dignity he gave my son for his last years."
The staff and faculty at the hospital hope Brett knew how much more he gave to others.
"As Donna and I talked the last day in the Intensive Care Unit, we both thought it was so ironic that Brett died of heart failure," Kathryn Edwards, M.D., the director of the Division of Pediatric Clinical Research, said in the eulogy she gave at Brett's funeral. "It seemed that he had spent his entire life giving his heartfelt love to others, finally his heart no longer had any more to give. He taught us so much about medicine, but much more about life."
Making History
Brett has been immortalized in a medical journal as one of the first cases ever recorded of lifelong human infection with bacteria called Alcaligenes. The germ is one that lives all around us in the soil and in nature, but doesn't usually infect humans. The study was published in the journal Clinical Infectious Diseases in 2000 and contained findings that have changed our view of the human immune system.
"The germ was living in his lymph system all of the time, and periodically expanded and spilled over into his blood," said James Crowe, M.D., professor of Pediatrics and director of the Vanderbilt Vaccine Center who was the author of the case study on Brett.
"We knew that one type of white blood cells that Brett had plenty of is typically the type that fights bacteria in our bodies. Brett's problem was with B cells that make antibodies, a whole different category of defense," Crowe said. "We would have expected that he would have been able to handle bacteria well, but when he had trouble dealing with this unusual germ, that taught us that antibodies or B cells play a role in fighting bacteria. It might seem like a small detail, but to those who study the immune system it was an important lesson we learned from him."
Whenever Brett's infection with this germ flared up, those who study infectious diseases would come by to see this rare and unusual medical phenomenon. But they always came away more impressed with Brett than with his medical record.
"The bug is called Alcaligenes, and I remember Brett would call it 'my pal Al,'" recalls John Williams, M.D., assistant professor of Pediatrics. "It was wonderful that he could joke about it. He was a quiet kid, but somehow he was always kind to those of us who were learning from him and we really enjoyed visiting with Brett." - by Carole Bartoo
What I've Learned
Kathryn Edwards, M.D., professor of Pediatrics, met Brett and Donna nearly 25 years ago when she discovered that baby Brett lacked an essential part of his immune system, the ability to make antibody.
"Brett taught us many medical lessons. Although he must have wished many times that he could run and play with others his age, or attend school like his peers, he never talked of the things he 'could' have done. If all of us face adversity like Brett and move forward in a positive way, our lives would all be better. That is the lesson he taught me."
Alexander (Sandy) Lawton, M.D., the Claiborne Stahlman Professor of Pediatric Physiology and Cell Metabolism and Director of the Division of Pediatric Immunology, guided Brett's care from the very beginning.
"When I think of Brett it is always in the context of his mother, Donna. From the time of his diagnosis in infancy she dedicated her life to giving Brett the best life possible. She had the strength to give him the independence he needed to pass from a child to a young adult. I admire his courage, but hers as well."
Becky Hicks, R.N., was one of Brett's primary nurses and now works on the eighth floor at the Monroe Carell Jr. Children's Hospital at Vanderbilt.
"I took care of Brett from when he was 8 years old until the night I took him down to the PICU before he died. He was such a sweet young man, always polite, had a smile on his face and never minded when new people came in to ask questions. Although he did hide his meds in the drawer sometimes! He always let me have nursing students with him and he taught them just like he taught us and all the medical students, interns and attending physicians. His mother's devotion and faith is what kept him alive for 25 years; she also taught us many things over the years."
Jennifer Najjar, M.D., assistant professor of Pediatrics in Endocrinology, helped Brett with the many hormone-related problems that result from his disorder.
"One night I was making rounds and passed by his door. I waved 'hi' and asked him what kind of a day he had experienced. He told me it was terrible and I told him mine had not been good either. Then he told me that to get out of a bad mood: 'You have to think about the next good thing you plan to do and keep it on your mind always. It works for me and it will work for you.' I have used that advice over and over again. I never thought that I would learn so much about adjusting to adversity, but Brett taught me that. I keep my chin up by remembering his advice and kind words."
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