No seriously ill child has an easy time of it. But kidney patients surely have some of the toughest times of all.
If they need a transplant, they must often wait for a donor for many months. If they must undergo dialysis, their lives are shaped around the need to visit a hospital regularly, and to spend hours there each time they come. In either case, young patients tend to become discouraged.
But many are more upbeat in recent years because of a contest in which they participate. Dozens of kidney patients at Children's Hospital have taken part in the contest, and some of them have won prizes. My associate, Michelle Hall, talked to several contest participants and officials. Her report:
Dora Adams, a 21-year-old from Accokeek, Md., who underwent her second kidney transplant at Children's Hospital in August, wants to tell people that "they can make a difference by signing an organ donor card. They can give someone a chance for a normal life."
But Dora transmitted her message in an unusual way. She wrote an essay of thanks to her donor, as part of an entry in a special contest: I don't know if you were male or female I don't know if you were young or old I do know you must have been a kind, generous, giving person Someone who cared about others To me you are a hero
The National Gift of Life Poster and Essay Contest began in 1981 as a small in-house poster contest for kidney patients at Children's Hospital. Pediatric nephrology social worker Camille Drake conceived of the contest as a way for children on dialysis, children who have had transplants and children with significant chronic kidney disease to express their feelings about living with illness.
Besides providing creative therapy for the patients, people who view the posters "develop a heightened awareness of . . . . what these kids are going through," said nephrologist Glenn Bock. Dr. Bock is cochairman of the annual contest, along with Drake and Dale Singer of the National Kidney Foundation of the National Capital Area.
The contest was held nationally for the first time in 1984. Last March, three finalists in each age group from 10 regions gathered for the final judging in Washington with parents, posters and essays. Local sponsors donated prizes, and various celebrities and political figures helped judge the contest. For the children who participated, it was a chance to get away from the hospitals where they spend so much time, and simply enjoy themselves.
"Instant friendships sprung up -- instant commiserations and comparing of notes. The parents became very involved with one another. The children were socializing normally with peers," Dr. Bock said.
Unfortunately, the life of a child with kidney disease is far from normal. Children without functioning kidneys who use a dialysis machine at a hospital usually come in three times a week, for between three and four hours each time. An alternative method of home care, called peritoneal dialysis, is available. But for medical reasons and because of the maturity level and time required to learn to use the method, it is not for everyone. After a few months on dialysis, most patients opt for a transplant, according to Dr. Bock.
"With the visibility of heart and liver transplants, people have sort of assumed that we have solved the problem of kidney transplantation, which is far from the truth," said Dr. Bock. "We have the technology now to transplant just about everyone healthy enough to undergo transplantation, but there are limitations." Children must be put on a waiting list because there are simply not enough donors.
Kidneys can be taken from willing members of the immediate family or from cadavers. Children's Hospital transplants between 10 and 15 kidneys a year. Although transplantation is extremely uncertain, Dr. Bock said that between 80 and 90 percent of the children who receive transplants from family members remain healthy several years later. Doctors believe that the health of the donor is not significantly affected.
The same themes dealing with transplantation surface again and again in the children's posters and essays, said Dr. Bock. "They're saying, 'I want to normalize my life. I want to achieve. I want to get transplanted. I want an organ. I want a donor,' " he said.
Philip Thomas Jr., an 18-year-old kidney patient from Charles County, Md., had no kidney problems between the ages of 7 and 17. But a blood test dictated that he begin dialysis in May 1983. He was called in for a transplant last September, but was not healthy enough to undergo the operation.
"Everything that possibly could go wrong does with me -- that's how it seems," Philip said. "But I think pretty soon I will get a donor . . . . It's rough because you never know when you'll be transplanted."
Philip won third place in the 1983 regional contest and will enter this year's national contest with his first-place drawing and essay from this region. His most recent winning entry portrays a Cabbage Patch doll and her donor card.
Philip, who plans a career in architecture, would like the public to understand the donor system better. If people understand that they will be helping someone else, he said, they won't be as frightened.
The contest posters are used at Kidney Foundation events around the country for public education. People with kidney disease "are a population that may not be large enough, powerful enough or articulate enough to . . . . get a sufficient amount of attention," said Dr. Bock.
The goal of the contest is to create a patient/parent forum in which the issues of kidney disease and treatment are discussed. The participants would return home and conduct similar forums in their home regions, improving understanding of the needs of kidney patients.
Dora Adams, who wants to begin taking classes at Prince George's Community College, won second place in this year's regional contest with a drawing of a clock.
The message read, "Time is running out. Sign a donor card, please."
TO CONTRIBUTE TO THE CAMPAIGN:
Make a check or money order payable to Children's Hospital and mail it to Bob Levey, The Washington Post, Washington, D.C. 20071.