Patient Pioneers

When Medicine Breaks New Ground, Doctors Are Not the Only Ones In the Spotlight

When Honore "Honey Rose" Rothstein took part in the first-ever five-way kidney swap at Johns Hopkins Hospital last month, she regarded it as a deeply personal event. She'd given her kidney to a stranger to honor her deceased daughter, not to seek attention. Six days later, she and her husband agreed to attend a press conference at the hospital, expecting it to be a quiet affair.

Instead, the shy, 48-year-old West Virginia woman found herself cast in an emotional made-for-TV moment: Just after she and the other four kidney donors met their five recipients for the first time, they were introduced to a throng of reporters.

"They announced my name, and all of a sudden all these cameras came right at my face," Rothstein said. "I don't really like to have my picture taken. It was like, 'Oh my goodness.' "

For patients involved in historic medical procedures, there's no such thing as keeping a low profile. Medicine may have advanced at just the right time to help them, but seizing the moment often means subjecting their lives, their decisions and their most intimate post-op problems to broad scrutiny. Public interest is understandable: Groundbreaking procedures tend to inspire hope that medical ingenuity can defeat the most serious ailments. For hospitals and doctors, attention can also lead to grants, additional research and a raised stature.

What that means for altruistic donors like Rothstein and even more so for people involved in dramatic experimental procedures is that public intrusion is a given. "It's going to happen," said Louisville surgeon Laman A. Gray, whose first-ever implant of a self-contained artificial heart made world news in 2001. He tells patients, "You can't escape it."

Standing Up to Hype

Doctors and patients in first-ever procedures often find each other almost serendipitously, just as research has advanced enough for a human test case.

Robert Tools, for example, the implantable heart recipient, found surgeon Gray after reading about his research in Newsweek. Raul Murcia, the first patient to have a thumb regrown and reattached, was brought to tissue engineering specialist Charles Vacanti after entering a Boston emergency room in 1998.

There's no perfect patient for a first-ever procedure. In the case of the artificial heart implant, ethical considerations led doctors to pick a terminally ill patient who had no tested treatments available.

Some patient pioneers must meet psychological criteria as well. When Cleveland surgeon Marshall Strome was preparing to perform the first total larynx transplant in 1998, he required a psychological workup of candidates -- and rejected some because he felt they weren't prepared for the accompanying stress or were too focused on their impending fame.

"Sometimes the medical import of [a procedure] gets lost in the hype," Strome said. "That's not what it's all about. It's knowing the individual, for the right reasons, wants this to be done."

Before newsworthy surgeries, doctors and public relations staffs often coach patients on how to handle the anticipated media frenzy. Some hospitals go to lengths to protect patients: beefing up security, covering hospital room windows and screening calls. But the pressure to reap the PR bonanza that comes with being first can be great -- as patients often learn.

Before Matthew Scott, a paramedic school director in New Jersey, underwent the first successful hand transplant in 1999 at Jewish Hospital in Louisville, hospital staff sat him down for a videotaped interview. While Scott recuperated, they then fed hungry reporters bits of the tape for days. The idea, said hospital spokeswoman Barbara Mackovic, was to buy Scott a bit more privacy. But sacrificing the hospital's chance at publicity wasn't part of the plan.

On the Defensive

Hoopla didn't always attend historic surgeries. When St. Louis infertility specialist Sherman Silber performed the first testicle transplant in 1977, there was little coverage. News got out, Silber recalls, only when the patient called a local newspaper.

But in the 1980s, hospitals started making themselves and their patients available to the media, according to Rick Wade, a senior vice president at the American Hospital Association. Now, he said, hospitals may spend years preparing to promote their big cases.

In 2004, when another of Silber's patients, Stephanie Yarber, became the first woman to give birth after an ovarian transplant -- getting ovarian tissue from her twin sister -- his hospital's PR department made an announcement that quickly became national news.

Yarber, who had developed premature menopause at age 14, didn't mind.

She promoted -- and defended -- the procedure in all its details, even after her local paper reported when she got her first period after the surgery.

"A lot of people came up and asked me, 'Are you embarrassed?' " she said.

"And I said, no, of course I wasn't. I was proud of that period."

She called the media's attention understandable -- "It's such a great story. It's not . . . about murder and rape" -- and hoped it might encourage other women in her situation.

Tools, who died just months after his implant, also felt satisfaction in helping to promote a medical breakthrough, said his wife, Carol. But the second recipient of a self-contained artificial heart, Thomas Christerson, who has also since died, felt uneasy with fame, according to his daughter Patti Pryor.

For a 70-year-old man who prided himself on remembering names, the notoriety was confusing, Pryor said. There were simply too many people greeting him, and he began to fear he was losing his memory. So, Pryor developed a system: When the people greeting her father were strangers, she'd nudge him, and then he'd feel better about not knowing who they were.

For people whose procedures prompt moral debates, the attention can be even less welcome.

Lisa and Jack Nash of Englewood, Colo., had a 6-year-old daughter, Molly, with a rare and deadly bone marrow disease called Fanconi anemia.

In 2000, they used in vitro fertilization to have another child, and they worked with their doctors to select which of several test-tube embryos to have implanted in Lisa Nash's womb.

In a medical first, they used genetic testing to choose an embryo that could develop into a suitable blood marrow transplant donor for Molly. The case triggered a national dispute over the ethics of genetically selecting a child.

As Molly was being infused with stem cells from the umbilical cord blood of her new brother, Adam, 250 reporters waited with questions, to Lisa Nash's dismay.

"I never ever, ever, ever in my wildest dreams imagined that our life and our fight to keep our daughter alive would become something that the world would debate," she said.

Years after their attention-getting surgery, some first-time patients are still pursued by reporters and researchers.

Lisa Nash won't talk to anyone she suspects wants to get into an ethics debate and has never allowed Molly to be interviewed.

Scott will talk to anyone he deems reputable; he even goes to medical conferences and lets doctors poke at his transplanted hand. To him, it's a responsibility that comes with being first.

"I just hope that someday this gets to a point that I'm no longer the textbook, and I'm just a footnote in the textbook," he said.

"I've always told people I just want to fade away into the annals of some dusty textbook. But until it becomes a wildly understood procedure, I understand that's not going to happen."

Jason Feifer is a freelance writer who lives in Massachusetts. Comments:health@washpost.com.