Author's daughter gets organ transplant after a frustrating eight-year quest

James Reston Jr. and his wife, Denise Leary, spent eight agonizing years searching for a kidney transplant to relieve their daughter's desperate disease.

The family's quest finally ended last July in the most unexpected of places--rural Iowa, halfway across the United States from their home in Chevy Chase, Maryland.

Reston, an author and a columnist for The New York Times, said his daughter, Hillary, now 21 years old, suffered a stroke at age two that left her mentally disabled and unable to speak.

Chronic kidney failure stopped her growth and led to years of difficult, time-consuming, and costly dialysis treatments. Only a successful kidney transplant could relieve her discomfort and restore a sense of normalcy to her life.

Five exasperating years passed without palpable progress. Organ transplant specialists at a medical center in Virginia did their best to find a suitable donor, but nothing worked out.

Frustrated by the delay, the Restons decided to gamble.

"Just by happenstance, we saw an article that suggested a discrepancy in the speed with which candidates from some urban areas move up the organ transplant list versus those from rural areas," Reston said. "The University of Iowa was even mentioned by name."

The Restons transferred Hillary's "points"--blood type and other things that need to match for a successful transplant--to the Iowa regional transplant list.

Shortly thereafter, in December 1999, the family brought Hillary to University of Iowa Children's Hospital, located at University of Iowa Hospitals and Clinics, for a pre-transplant evaluation. The specialists she saw included Craig Porter, M.D., a pediatric nephrologist, and Stephen Rayhill, M.D., an organ transplant surgeon.

"The whole spirit of University of Iowa Hospitals and Clinics absolutely thrilled me," Reston said. "I remember one clinic visit in particular. After examining Hillary, one of the doctors told us a transplant would be the humane thing to do. In all our years of frustration and hope, it was the first time anyone had phrased it that way."

The family's wait didn't end immediately. Finally, on July 17, 2002, a phone call from Transplant Coordinator Barbara Schanbacher, R.N., turned the tide. A donor had been found and a transplant could be performed if the Restons could fly to Iowa by midnight.

"We almost missed the last flight to Cedar Rapids, but we talked our way onto the plane," Reston said.

The transplant procedure went smoothly. Hillary's donor was a near perfect match, and she passed through the period of highest risk without rejecting the donor organ.

"It's just miraculous how well she's doing," Reston said. "It's like she's got this Maserati motor in her. The outcome has exceeded all our expectations."

As profoundly moving as the transplant was--Reston likens it to the birth of his first child--he realizes his family's joy was made possible by another family's tragedy.

In this case, the family of an Iowa teen-ager had to decide whether to consent to use of their son's organs for transplant. The young man died in an all-terrain vehicle accident.

Reston describes the donor family's difficult decision as generous and noble.

"It's brought so much joy to us because it was the end of suffering for Hillary," he said. "We can't thank them enough."

'Brave new world' of plentiful donor organs still a dream

Through the years of struggle on his daughter's behalf, author James Reston Jr. has learned to appreciate the heroic nature of organ donation and what the shortage of available organs means from a human standpoint.

In a column for the The New York Times written during his stay in Iowa City, Reston eloquently revived Aldous Huxley's vision of a brave new world, in which the central hospital has an organ store in a basement where the shelves are well-stocked with organs whose donors are anonymous and unimportant.

"Perhaps some day, when stem cells can grow into kidneys and hearts or when organs from 'nude pigs' stripped immunologically of their pigness, can be transplanted into humans and not rejected, we will achieve that time of plenty," Reston wrote.

"Until that day, families on organ transplant lists live a much more profound reality; that one person's joy is another person's tragedy. Deliverance from desperate disease sometimes depends on the generosity of others, and society is not always generous."

Books by James Reston Jr.

• Warriors of God: Richard the Lionheart and Saladin in the Third Crusade
• The Innocence of Joan Little: A Southern Mystery
• Sherman's March and Vietnam
• Our Father Who Are in Hell: The Life and Death of Jim Jones
• The Last Apocalypse