The Search for a "New Normal"
Clifton Park -- Kaylea Aldrich ran around her family's living room, jumped onto the sofa next to her parents and demanded: "Read!'' More than a month after almost dying from an E. coli infection that killed her sister, Kaylea appeared as energetic and curious as any 2-year-old. "She's up running around pretty much all day,'' said her father, Wayne Aldrich, in their suburban apartment on a recent afternoon.
The future, however, is uncertain for Kaylea and the 10 other children who survived severe complications from the E. coli outbreak at the Washington County Fair, which ended Aug. 29. State health officials said a well contaminated with cow manure is responsible for the largest E. coli outbreak in New York history. Two people died, 65 were hospitalized and 1,079 became ill.
In the days following the fair, both Kaylea and her 3-year-old sister, Rachel, were sickened from the bacteria, which produces a powerful toxin that can cause severe abdominal cramping, bloody diarrhea and kidney damage. Rachel died on Sept. 4, just five days before her fourth birthday.
She developed hemolytic uremic syndrome, a complication in which the toxin causes kidney failure. Eleven other children, including Kaylea, also came down with HUS but recovered. HUS is not a new illness; researchers identified it as early as the 1950s when it killed as many as 40 percent of all people affected. There is no cure. But today, with dialysis, 90 to 95 percent of those who contract it will survive. Yet, the long-term prognosis for survivors, especially children, remains unclear.
"For any specialist to say all these children are going to go home without a problem is simply not true,'' said Dr. W. Lane Robson, the director of pediatric nephrology and continuing medical education at the University of South Carolina School of Medicine. "Nobody has followed these children for a lifetime, nobody really knows the longterm impact of HUS on the kidneys and the body.'' Researchers do know that as many as 30 to 50 percent of the survivors will have longterm problems, such a high blood pressure.
Another 5 to 10 percent will require regular dialysis or kidney transplantation, according to Dr. Richard Siegler, a pediatric nephrologist in Salt Lake City. Lori and Wayne Aldrich said they're trying to take life one day at a time. "The days are a lot easier to cope with than the night,'' said Wayne Aldrich, 32, who works nights as a graphics designer at the Gazette Newspapers in Schenectady.
"When she goes to bed, that's usually when it hits us we're missing one.'' Since Kaylea came home from the hospital on Sept. 20, the family has returned to see their doctor twice. Because the E. coli toxin destroys red blood cells, Kaylea required numerous blood transfusions. She has since developed a heart murmur that doctors believe is linked to prolonged anemia from the losing so much blood. Yet her 26-year-old mother notices other changes in the wake of the illness, from a new apprehension of doctors to concern about the smallest of "boo-boos.'' "She's more clingy, she wants to be with me all the time.
"Because she lost her sister, she lost her best friend and her playmate,'' Lori Aldrich said. Wayne added: "One time she was throwing a tantrum and she said, 'I miss Rachel.' '' Dr. Randall Jenkins, a pediatric nephrologist in Portland, Ore., has treated many kids with HUS over the past decade, including several children sickened by contaminated hamburger from the Jack in the Box restaurant chain. That outbreak killed four and sickened hundreds. Of his young patients with HUS, several developed high blood pressure, and another two will need a kidney transplant, he said. "The average child who survives will recover kidney function,'' he said. "That doesn't mean it's always going to stay that way.
"You really don't know for a long time who is going to have problems.'' The Aldriches have hired a Syracuse attorney to represent them in their legal case against the Washington County Fair organizers but won't comment on the specifics. The couple has spoken out on the need to prevent any future outbreaks and on their hopes to keep their daughter's memory alive with a memorial scholarship fund for medical students. "If I didn't have the gospel with me, I'd probably be blaming God,'' said Wayne Aldrich. "I think this was a bit of negligence. Whoever turned on well 6 didn't mean to kill my daughter. I don't hate anyone. I don't blame anyone.'' A deeply religious couple, Lori and Wayne Aldrich married on May 18, 1993, almost two years after meeting at SUNY Plattsburgh, where Wayne was taking journalism classes and Lori was studying psychology.
Lori introduced her future husband to Mormonism, a moment that Wayne described as a turning point in his life. "This week some spiritual things have happened to me,'' he said. "It's just confirmation from God that Rachel is OK and that he took her out of mercy.'' The couple is disappointed that nobody from the fair has contacted them to apologize and said they are ready to forgive. "I feel bad for whoever turned on that well,'' Lori said. "They must feel such incredible guilt.''
At the apartment, Kaylea seemed carefree, running in a new denim jumper given to her by state Health Commissioner Dr. Antonia Novello and pleading with her mother to let her play the piano. The toddler climbed up on the bench and banged on the keys, creating her own tune for a song she loves. "I am a child of God,'' she sang, "I am a child of God.'' "That's Rachel's song,''
Wayne said, remembering how he and his wife sang that song to their daughter before turning off her life support. Asked if they ever thought their lives will return to normal, Lori said, "I think we have to create a new normal. It's not going to be the way it was.''