Implants: A Family Affair

By Claudia Wallis

A year has passed since William Schroeder awoke in Louisville to the sounds of an artificial heart thumping away in his chest. The promise of that day has almost vanished. All but gone is the man who impressed the world with his spunk--teasing his doctors just days after surgery, asking for beer, talking forthrightly with President Reagan by phone and bullishly announcing to the world, "I feel like I've got ten years left." Three strokes, one suffered in mid-November, have left the once irrepressible Schroeder feeble, barely able to speak, weepy and depressed. His fondest hope--to return to his home in Jasper, Ind.--has been repeatedly dashed by setbacks. "We have bounced from emotions of excited, happy and hopeful to frustrated, sad, angry and helpless," says Schroeder's son Mel, 31, an engineer. "It hasn't been the easiest of times." Not for Bill Schroeder, and certainly not for his family.

While world attention has focused on Schroeder and the other four recipients of the permanent artificial heart, little has been said about the families who are, in every sense, fellow participants in a grueling human experiment. "We have never had an experiment before that has required such emotionally and physically exhausting participation on the part of the spouse," says George Annas, a professor of health law at Boston University and an authority on patients' rights. He notes that the heart program at Humana Hospital Audubon in Louisville "actually requires that you have a family" and that the family's willingness to provide support is one criterion used in selecting patients. But, he asks, reflecting a growing concern in the medical community and elsewhere, "What are we doing to these families?"

Though close relatives of transplant patients have tended to be stoic, the toll has been considerable. It was only after the death of Barney Clark, the first man to receive a Jarvik-7, that his wife Una Loy admitted her travail. The stress of the 112-day vigil was so great, she said, "I had a hard time realizing what day of the week it was."

Jack Burcham survived for only ten days with his implant last April, but, says his wife Jinx, the experience seemed "a long, long terrible nightmare." Margaret Schroeder, enduring the longest bedside vigil of all, has spent months at a time in Louisville, 100 miles from her home. Last September she became so exhausted that she was hospitalized. She rarely gives interviews but told Annas that "she felt she was a prisoner of the artificial heart." Concern about their mother has added to the stress on the six Schroeder children. "The only thing worse than having one parent in the hospital," says Mel, "is having two." The sufferings of Jarvik-7 patients, further emphasized by the death last month of Swedish Recipient Leif Stenberg, 53, have led a growing number of doctors to demand a moratorium on permanent implants. Dr. William DeVries, the only U.S. surgeon authorized to perform permanent implants, disagrees; he has announced that he intends to try Jarvik-7s in three more patients. None of the families of DeVries' earlier patients has criticized that decision. Indeed, the Schroeders say they are grateful for the good times they have had with their father this year: a fishing trip in April, a baseball game in July, playing cards. "When he yelled at you," says Terry, 26, "it was just like old times."

Nonetheless, the Schroeders do feel that the families of any future recipients should be given a clearer idea of both what to expect and what will be expected of them. Particularly important, says Mel, is that implant candidates discuss with their families in advance what actions to take if disabling complications occur and the patient's quality of life becomes marginal. Says he: "We thought it was going to be either yes or no. That he was either going to live or die." No one counted on a state of existence somewhere in between. --By Claudia Wallis. Reported by Barbara Dolan/Louisville

With reporting by Reported by Barbara Dolan/Louisville