Rare generosity of a stranger holds promise for boy's health

Harford teen-ager to get kidney from Ind. woman

August 23, 1999|By Lisa Respers | Lisa Respers,SUN STAFF

Joyce A. Roush has never met 13-year-old Christopher Bear Bieniek, but she sees it as perfectly natural to offer him the gift of a better life.

The 45-year-old Fort Wayne, Ind., woman will donate one of her kidneys next month to the Harford County teen-ager in what organ donation experts say is a highly unusual donation by an able-bodied person to a stranger.

It is so unusual that Johns Hopkins Hospital, where the surgery will be performed Sept. 7, had no protocol for such a donation. The hospital's ethics review board had to approve the procedure.

"People keep asking me why I'm doing this, and my response is, `How could I not?' " said Roush, an organ donation coordinator in Indiana who hopes that she will inspire others to become donors. "I know not everyone will come rushing to do this, but I think people should know that they can donate, and there are so many people out there who need them to."

The story of how the lives of the Midwestern woman and the Aberdeen teen-ager connected started just before Christmas. Bieniek, whom everyone calls by his middle name Bear, became ill with what his family believed was a cold.

"They took some blood work and ordered him into the hospital right away," said his father, Harold Bieniek. "He had never even been in the hospital before."

Tests revealed that the boy's kidneys had not grown with the rest of his body and were failing. He was placed on medication and daily dialysis to clean waste from his blood.

The dialysis restricted his activity, and the boy's family worried that his illness would keep him from fully enjoying his childhood.

Harold Bieniek -- who gave his son the unusual middle name because he was born the day the Chicago Bears won the Super Bowl in 1986 -- said his son responded calmly to his illness.

"It's been a little trying for us, and he did better than we did," said Harold Bieniek, who works as a maintenance mechanic. "He's dealt with it well."

Roush, a coordinator for organ donation at the Indiana Organ Procurement Organization, had attended a meeting of regional organ procurement coordinators in Indianapolis -- including a presentation on kidney transplant surgery by Dr. Lloyd Ratner of Johns Hopkins Hospital.

Ratner and colleague Dr. Louis R. Kavoussi are pioneers in a kidney removal procedure known as laparoscopic nephrectomy.

Using a camera inserted into the abdomen, surgeons are able to remove the kidney after making a 2- to 3-inch incision below the patient's navel. The technique is less invasive, less painful and requires a shorter hospital stay than conventional surgery.

Roush said it took her only moments to make her decision after hearing the presentation.

"I knew it was something I wanted to do," Roush said in a telephone interview from her home. "I approached Dr. Ratner about it, and of course his first response to me was did I know someone who needed a kidney."

Roush underwent physical and psychological tests as well as blood work to determine that she was healthy enough to donate, and officials began searching for a potential match of the thousands awaiting kidney transplants.

"They told me it could take three to five years to receive a new kidney," said Bieniek, a shy, soft-spoken teen-ager who sports a spiky haircut. "It only took me six months."

Roush's move is more than unusual in the world of organ donations, where many donations are postmortem and where living donors typically give to friends or relatives, said Kris Robinson, executive director for the Tampa-based American Association of Kidney Patients.

According to the United Network for Organ Sharing, a Richmond, Va.-based organization that maintains the transplant waiting list, 11,990 kidney transplants were done last year nationwide.

But Robinson said, "It's very rare for somebody unknown to offer an organ. It's very kind of her."

Roush is quick to dismiss talk that she is a heroine. The real heroes, she said, are those who make the decision to donate the organs of their recently deceased loved ones.

"I am blessed with a healthy family, and for me there is no pain involved in this decision," said Roush, who is the mother of five. "Christopher is someone's child, too."

Bieniek, who lists video games and fishing as two of his favorite pastimes, spends eight hours a night connected by a 12-foot hose to a dialysis machine in his room. He said he is looking forward to a full recovery so he can resume playing soccer and being more active.

Bieniek and Roush are eager to meet -- though Bieniek acknowledges he is worried about the surgery and a little shy about talking to the woman whose kidney will soon become a part of him.

But even if he's not sure how he will act around Roush, Bieniek's father isn't.

"You should give her a big kiss, Bear," his father said as he watched his son play a video game. "If you don't, I will."

Pub Date: 8/23/99

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