Back in 1999, a man in England read a newspaper story about an Israeli girl who was in St. Louis awaiting a lung transplant. A few days later, he had quit his job, drawn out his savings and was on an airplane across the Atlantic, en route to donate one lobe of his right lung.
Until the late 1990s, such acts were quite rare but have been on the rise ever since. Examples:
• A nurse in Fort Wayne decides she wants to donate a kidney to anyone her chosen transplant surgeon deems deserving. The organ is successfully transplated to a 13-year-old boy from Aberdeen, Md.
• In Baltimore, a woman learns that a co-worker is in desperate need of a kidney and, even though they are not particularly close acquaintances, offers hers.
• At the Federal Trade Commission, an employee is shocked to learn that her boss and mentor has been on dialysis three times a week and is in increasingly dire straits. She volunteers a kidney.
Those with an optimistic outlook are cheered by these and similar incidents of generosity by unrelated donors. They're hopeful that it's the beginning of a new groundswell of organ and tissue donation.
But others are wary.
"These cases warrant great scrutiny,"said Dr. Mark Adams of the Medical College of Wisconsin. "Certainly in the old days, when almost all kidney donations were from live donors, our experience with unrelated donors was quite bad. We had all kinds of people coming out of the woodwork, people with secondary motives."
Adams recalled instances of donors who began harrassing recipients whose kidneys had failed, accusing them of not taking their medication or not being sufficiently protective of their new organ.
"I don't know if anything has changed fundamentally since then. Human nature is a constant. What if we get people who say they only want to donate to white people, only want to donate to Christians, only want to donate to someone who's never been in jail?" Adams said.
Indeed, there are "a million ethical issues," said Robyn Shapiro, an attorney and director of the Center for the Study of Bioethics at the Medical College of Wisconsin. The primary problem, in Shapiro's view, is obtaining informed consent. Since the long-term -- and even short-term -- risks of organ donation are somewhat variable, it is difficult for both the donor and surgeon to be confident that the decision has been rationally considered.
"In one sense," Shapiro says, "Society has put itself in a tough position. We've prohibited any financial incentive, saying the system must be founded on altruism. But then when we have someone who comes along and basically does the ultimate altruistically, that sets off alarm bells."
Ronald Johnson
If so, then St. Louis surgeons must have been nearly deafened by the clang of alarm bells when Ronald Johnson appeared in 1999, eager to have his chest cut open and a portion of his lung removed.
Johnson, 48, a building maintenance worker in Hackleton, Northamptonshire, England, had never heard of Lisa Ostrovsky, a 10-year-old Russian Jew living in Israel, until he read about her in the newspaper. After reading the brief story, he turned to the Internet for more information and there found an appeal by the girl's family for a volunteer donor.
Johnson, a father of two who had been diagnosed with depression, is not Jewish. But he said he had long wanted to do something to help the Jewish people because of what happened to them in the Holocaust.
"I see this as an opportunity to do my bit," a London newspaper quoted him as saying. He was tested and when it was determined that he was a match, Johnson was soon bound for St. Louis Children's Hospital, where officials say he was interviewed in depth and found to be a suitable donor, both physically and psychologically.
A few days later, Johnson and Lisa's mother, Valentina, went under the knife at Barnes-Jewish Hospital, each giving up one lobe from their right lungs and thereby losing about 20 percent of their breathing capacity. The harvested lobes were rushed the 100 yards to Children's Hospital, where Lisa lay near death from cystic fibrosis.
The six-hour surgery was difficult but uneventful. A few days after the surgery, Johnson visited Lisa, meeting her for the first time.
"I asked if I could be her uncle and she took her oxygen mask off and asked her father if she could give me a kiss. I said she couldn't because I was married and she laughed," Johnson said in an interview with The Daily Mail.
"That was a wonderful moment. The nurses said it was the first time they had seen her laugh," he said. Johnson returned home a few days later, weak but confident he had helped to save the life of a child.
Just before Christmas, Johnson paid his first visit to Israel, where was hailed as a hero. He met with Reuma Weizman, wife of the then-Israeli president and patron of the Cystic Fibrosis Foundation. He was feted by Lisa's schoolmates, who gave him a large portrait bearing the words, "Ronald Johnson we love you" in Hebrew.
Upon returning home, Johnson developed bronchitis and was hospitalized. He admitted he "overdid things a little" but insisted, "My suffering is nothing compared to Lisa's mother, Valentina. Her operation was much more serious."
Indeed, the removal of the lower right lobe involves a large incision and is major surgery. One of Johnson's ribs was broken during the procedure, which has been performed about 80 times, almost always on relatives of the intended recipient.
But as Johnson and Lisa's mother recovered, Lisa's condition worsened. Her body was rejecting both grafts, an infection set in and soon Lisa was on life support, her condition grave. Despite everyone's efforts, she died.
Johnson was devastated.
"It was a terrible blow," he said. "My first feeling was that I wished I could have stayed in the U.S. to be with Lisa." Instead, he returned to Israel, joining mourners for a traditional Israeli funeral for Lisa on a kibbutz by the Sea of Galilee.
So where does this leave Johnson, other than jobless, considerably poorer and still looking pale and thin?
"If I could do it again tomorrow, I would," he told The Mail. "Everyone says I have made a massive sacrifice but look at me -- I'm alive, I'm fine. As soon as my broken rib heals, I will be back at work."
In fact, the experience seems to have given Johnson a new purpose in life. He has been in touch with his Member of Parliament, Tony Clarke, hoping to spark a debate about living, unrelated donors in the U.K., encouraging others to come forward.
"I wouldn't advise anybody else to do it, I wouldn't be so presumptuous. But I would urge everybody to think about it," said Johnson. "My only regret is not being in America longer to take some of the burden off Lisa's parents."
Joyce Roush
While Joyce Roush's story is not as dramatic as Ronald Johnson's, it is equally significant. She is one of the first donors to have given "to the list." A nurse who works for the Indiana Organ Procurement Organization, Ms. Rouse is well aware of the critical shortage of cadaver organs.
She was attending a conference where she heard Dr. Lloyd Ratner of Johns Hopkins University describe the new laparoscopic laphrectomy, the much less invasive procedure under which the donor kidney is removed through a small incision that greatly speeds recovery and reduces risk. After his presentation, Ms. Rousch approached Dr. Ratner and told him she wanted to donate a kidney to whomever to the list.
The offer was accepted and last Sept. 7, the kidney was transplanted into Christopher Bieniek, a 13-year-old from Aberdeen, Md. Ms. Roush was thrilled, not only by the successful procedute that gave Christopher a new start in life but by the outpouring of public response that followed news of her gift.
Within the first few days after her operation, Johns Hopkins received "15 to 20" calls from prospective donors. On her way home, a flight attendant recognized her and said that she, too, planned to donate an organ.
"I think God tapped me on the shoulder and asked me to do this. I did think there would be others who would come forward," she said.
Ms. Roush, a mother of five, said she had no serious misgivings about her decision. Her youngest child is 15 and her overall health was excellent. After a few discussions, her children and her husband, an eye doctor who had initially been skeptical, came to support her decision.
Dr. Ratner said he welcomes more donors as long as they are appropriately screened.
Anonymous
At about the same time Joyce Roush was making her donation, an unidentified woman in Minnesota donated a kidney to a stranger. Both the 50-year-old donor and the recipient requested anonymity, but the response was similar -- heightened public awareness of the need for organs and an increase in calls from potential donors.
The donor had approached several medical centers and been turned down before she came to the University of Minnesota, which was a leader in the use of living donors for kidney transplants.
Dr. Jeffrey Kahn, director of the Center for Bioethics at the University of Minnesota, said the anonymous donor was carefully screened and found to be perfectly sane and extremely altruistic, and he said the center is gearing up for more donors willing to let the organ network choose the best recipient.
"Is it worth it? Surgeons say that one person off the transplant list is a huge success," Kahn said.
Margie Stickles
Margie Goralski Stickles and Rhonda DeLaremore work for the Transplant Resource Center in Baltimore. Though they were not particularly close friends, Stickles felt nearly overwhelmed as she heard DeLaremore telling her co-workers that a kidney that had kept her alive since 1993 was failing and that she would soon be on dialysis.
DeLaremore explained that her kidneys had failed when she was 32 because of an infection but that a kidney donated by her sister in 1993 had changed her life. She became so healthy and appreciative of her second chance that she adopted a baby girl and took a job educating the public about organ and tissue donation.
Stickles, who also has a small child who had suffered from the same kidney infection, became determined to donate one of her kidneys to DeLaremore.
Soon the women were holding hands, lying side by side on twin gurneys at the University of Maryland Medical Center. They were rolled into adjoining operating rooms, where surgeons removed Stickles' kidney and transplated it into DeLaremore.
But although the surgery was successful and both women came through in "terrific" shape, DeLaremore said one question troubles her: "This isn't like lending somebody $5. How do you really thank somebody for giving you a part of their body when they don't have to do it?"
"I felt like, how will our relationship change? Am I going to have to be beholden to her for the rest of my life?"
Stickles brushed the question aside. "If it buys her a few more years without having to tolerate dialysis, whatever it takes, I have the ability to help. I want to do it."
The women were an exceptionally good genetic match, doctors said, better than DeLaremore and her sister had been.
"We are all a lot more alike underneath than some of us want to believe," said DeLaremore, who is black. Stickles, who is white, agreed.
Nancy Nearing
Nancy Nearing had always felt lucky to have Art Helms as a boss. In their six years of working together at the Federal Trade Commission, Helms had been generous and understanding and had helped Nearing, 42, balance her career as a technical writer with the needs of her family, which included two young children.
Although she knew that Helms was on dialysis three times weekly, Nearing was shocked to when his condition began deteriorating and he became unable to hide the pain that accompanied his every move.
"It just blew me away that he was that sick and I hadn't realized it," she said.
The day Helms told his computer programming staff that he was losing both kidneys, Nearing resolved to do something. She went home and discussed it with her husband. Later she left a message on Helms' answering machine, offering him one of her kidneys.
"I was just taken aback," Helms said. "It sounded so radical, I couldn't absorb it."
But to Helms' physicians at Georgetown University Hospital, the offer sounded generous, altruistic, maybe even heroic but not radical. Nearing was extensively tested and relentlessly grilled and was found to be in excellent physical and psychological health.
"It's one of the most courageous acts that anyone can do," said Dr. Lynt Johnson, who performed the successful surgery on Helms. "There are not too many things that one can do in one's lifetime that have greater significance."
Nearing's act of courage came none too soon. By the time they were removed, Helms' kidneys weighed 50 pounds and he was developing congestive heart failure.
Nearing's gift was especially welcome because Helms' disease is genetic and therefore, he and his wife wanted to preserve Mrs. Helms' kidneys in case one of their three teenagers developed the disorder.
"Nancy's gift is mind-boggling," Helms said. "I feel like I'm 30 again." He said the gift had profoundly affected his children as well. "It put a whole new perspective on life, with all this incredible goodness coming this way."
At the Nearings' North Arlington, Virginia, home, neighbors showered Nancy with flowers, cards, even chicken dinners. He daughter brought a sonogram of her mom's kidney to show and tell class at school.
But to Nancy Nearing it all seems quite simple: "I had a choice of either wringing my hands and saying, 'Oh, dear," or doing something about it."
Kyle McNamara
Kyle, 32, and Randy Roberts, 38, had been friends for 10 years and co-workers at a Boston refrigeration service for two. They are now closer than ever, essentially sharing a liver.
Several years ago, Roberts contracted hepatitis C when he was inadvertently given an infected blood product as treatment for an immune deficiency. As sometimes happens, the hepatitis caused severe liver damage.
Roberts faced years of illness and uncertainy. As his liver function declined, he went onto the waiting list for a cadaver organ. But since many on such lists die before an organ becomes available, it was scant comfort.
McNamara wanted to help his friend and, after extensive consultations, interviews and examinations, on Feb. 1, 2000, doctors at Lahey Clinic removed about 60 percent of McNamara's liver in a grueling six-hour procedure, then handed it to the team that transplanted it into Roberts.
With all deference to those who have given up a kidney, the donation of half a liver is a much more sobering prospect. There is no laproscopy when it comes to livers. There is a large incision and treacherous surgery on an organ that is a virtual ballon of blood. The slightest misstep can have catastrophic consequences.
Indeed, many transplant surgeons turn away when living liver donation is mentioned. The mortality risk to the donor has been estimated to be as high as 10 percent. The biggest potential risks to the donor are bleeding and damage to the bile duct, either of which can be fatal.
The long-term risk may not be as high but may nevertheless be substantial. No one is quite sure.
Nevertheless, living liver donation is on the increase. The McNamara-Roberts procedure was the 12th performed in just over a year by Dr. Elizabeth A. Pomfret and her Lahey team.
There is a great feeling of relief when the difficult procedure goes well and the patients are on their way back to a healthy, normal lifestyle, Pomfret said.
"There is a sense of being thankful to whatever you believe in -- God, whatever -- thankful that all went well."
Ask not ...
Depending on your point of view, the cases profiled above may represent the very best of human behavior -- unselfish, generous, altruistic -- or they may, as ethicist Robyn Shapiro cautioned, set off alarm bells. One surgeon interviewed for this article was skeptical of unrelated donors. "I'm not saying they have a screw loose but they may have one or two in the wrong place," he said.
But to most surgeons and health care professionals who daily see the toll taken by disease and the lack of available organs, third-party organ donation is a gift beyond human valuation.
"The Samaritan mentality is out there. I think it's ethically OK. We have to be cautious about the intention of the donor and that they are psychologically cleared by a team that is sophisticated and independent of the transplant group," one leading surgeon said.
"But with that said, I don't have an objection as long as the risk is minimal. Our first dictum is 'First, do no harm.' Beyond that, one has a responsibility not to harm oneself. But if the harm is minimal and the benefit is great, then that becomes the ethical framework."
At some major transplant centers -- like Barnes-Jewish Hospital and St. Louis Children's Hospital at Washington University Medical Center -- the number of transplants involving living organ donors now exceeds the number of transplants using organs from deceased donors.
Dr. Mark Ehrenreich, director of consultation psychiatry at the University of Maryland Medical Center, where Margie Stickles and Rhonda DeLaremore were treated, evaluates many of the unrelated donors. He makes sure they understand the risks, chiefly the possibility of excessive bleeding. Most, he finds, are donating an organ for the purest of reasons -- to help someone. It becomes a defining moment for them, he said.
The United Network for Organ Sharing, which coordinates transplants throughout the United States, has endorsed the use of strangers, as surgeons and ethicists rethink their views about the amount fo risk society should permit people to take on behalf of others.
At first, only blood relatives were allowed to donate at most centers. Then, spouses and other genetically unrelated donors became commonplace, followed by friends, co-workers, members of the community and now strangers from around the world.
"It's just the next logical step," Dr. Jeffrey Katz, director of the Center for Bioethics at the University of Minnesota told the New York Times. "If you look at it that way, it's not surprising at all."
Surgery is never completely safe, of course, and many surgeons and ethicists worry about operating on a healthy person for whom the procedure might be seen as all risk and no benefit.
Who benefits?
But is there really no benefit? Selfless altruism, once the province of philosophers and theologians, is now debated, defined and deconstructed by evolutionary biologists, among others.
Ethicists are fond of breaking altruism into two categories -- "kin-selected altruism," such as occurs between blood relatives, and "reciprocal altruism," such as occurs between non-relatives who have entered into a pact to exchange favors.
The former is quickly evident and easily recognized in all species -- a worker bee risking her life to help her sister or a human father dashing into the street to protect his child.
The latter can be a big more opaque. Robert Trivers is widely considered to have definitively described reciprocal altruism in a 1971 paper in which he showed how a gene that predisposes its carriers to help a like-minded friend can prosper as a result of its carriers' actions, so long as the costs to the giver are more than compensasted by the benefis that he receives in exchange.
Lenny Skutnik
Those who were in Washington, D.C. on Jan. 15, 1982 live with the memory of Air Florida Flight 90 crashing into the 14th Street Bridge during the height of a paralyzing midday blizzard.
As debris, luggage and human heads bobbed among the ice floes of the Potomac that freezing day, a young government worker watched in growing frustration as rescue workers stood on the river bank and threw ropes towards the semi-conscious victims. The ropes fell short. Overhead, helicopters also dropped ropes but the passengers were too weak from trauma and the freezing water to hold on.
Finally, Lenny Skutnik, who had never taken a lifesaving course, could watch no longer.
"I just did it," he said later. He threw off his coat and shoes, barged past the rescue workers and leaped into the river. He swam strongly to a woman who had repeatedly lost her grip on the ropes, Her head lolled back into the water as he reached her, seized her and pulled her to shore.
Skutnik, then 28, was a low-ranking government employee, a messenger for the Congressional Budget Office, struggling to support a wife and two young children.
While the woman whose life he had saved was being tended to, Skutnik gave his coat to a crash victim who lay shivering in an ambulance that had run out of blankets.
He initially refused treatment himself and, upon arrival at the hospital, asked, "Is this going to cost me anything?" Assured that he would not, he warmed up in a hot tub for a few minutes before heading home to his rented townhouse in the suburbs, eager to be away froom the bright lights and "How did it feel?" questions of the mob of reporters.
Finally home, Skutnik learned that a "secretary" (actually an associate producer) for ABC's "Nightline" had been pleading with Mrs. Skutnik to persuade her husband to be Ted Koppel's guest that night. The young woman said she might lose her job otherwise. Though bone-tired, Skutnik traveled back downtown to be asked how it had felt, but only because he said he didn't want the secretary to lose her job.
Skutnik dismissed further media attention and grew irritated with the constant questioning of what seemed to him the only acceptable course of action.
"Nobody else was doing anything. It was the only way," he said.
Another Flight 90 Hero
Lenny Skutnik was not the only hero that freezing day. The most sublime multiple acts of heroism were performed by an Air Florida passenger whose identity was never firmly established. Apparently uninjured in the crash, the man bobbed in the water and repeatedly -- over and over -- guided rescue ropes to other passengers who were unconscious, trapped in their seats or too weak to grab onto the ropes.
Finally, after he had saved everyone he could, the man, weakened by the cold, himself sank beneath the water despite rescuers' frantic attempts to reach him.
Whoever he was, the nameless passenger obviously had possessed the strength and the skill to rather easily save himself but chose -- there is no other word -- - to sacrifice himself to save perfect strangers who simply happened to be in the freezing waters of the Potomac that unforgettable day.
Sid Baxter
Six Baxter, 50, makes airplane parts. He understands airplanes. So as he flew from his home near San Diego into Little Rock on business one rainy night in 1998 he knew things had taken a turn for the worse.
"I knew we were going to crash. I was getting ready to die. Then we hit a light at the end of the runway and the plane split open. I thought, 'I'm still breathing. I can smell the fumes so I know I'm alive.'"
In total darkness, frenzied passengers fought their way to openings ripped in the side of the American Airlines jet that had gone off the runway after landing too fast in gale-force winds. As Baxter tried to wriggle free of the debis and escape, he heard a faint voice: "Somebody help me." Thick black smoke was billowing through the cabin and the smell of burning plastic was nauseating. Baxter knew he had to get out ... fast.
But there was that voice. Baxter fought his way through the demolished cabin to where Kristy Sheridan lay, paralyzed by a neck injury and pinned under a luggage rack that had ripped away from its supports and landed on top of her. Baxter wrestled Sheridan loose and crawled along the floor, dragging her to what had been the first-class cabin, where the two fell through a jagged hole into a swamp off the end of the runway.
The smoke was worse than ever and Baxter knew the plane was about to explode into flames. Somehow, the 5-foot-7 Baxter hoisted Sheridan, 6-feet-1 and 190 pounds, onto his back and waded through neck-deep water to safety.
Sheridan recovered from the paralysis, which was caused by a cracked vertebra. She has no doubt she owes her life to Baxter. Everyone else who could move stampeded to safety, ignoring her cries for help, leaving her to die, even stepping on her in their desperate bids to survive.
"I tell her anyone would do the same," Baxter says, all evidence to the contrary notwithstanding.
Baxter was not related to Sheridan, had not spoken with her prior to the crash. To him she was only a thin voice in the darkness, crying for help.
Why?
The equation does not seem to be in balance. The selfless altruists we have met here do not fit neatly into the theoreticians' neat equations.
For the most part, they do not receive a measurable benefit from their actions. Oh, perhaps Nancy Nearing feels a rush of pleasure when she sees her boss restored to health and vigor and surely Margie Stickles will always get a warm glow when she passes Rhonda DeLaremore in the hall. But this is hardly the same benefit as that enjoyed by a parent who donates a kidney to his child or spouse.
Or is it?
Some bioethicists have come to believe that those humans who are endowed with the altruism gene are driven to perform acts of selfless benevolence as part of our species' determination to preserve enough of its members to ensure its survival. Viewed in this manner, as a part of what is called evolution's striving for environmentally stable strategies, it is not necesssary for such naturally-born altruists to perceive any direct kinship, or even any positive characteristics, in those they rush to aid.
Just as natural selection distributes the other talents and aptitudes we need to adapt and survive, so it provides a chosen few in each generation who put the survival of others ahead of their own. We have piano players, surgeons and programmers. Why not heroes?
In another plane of experience, we would call these people saints, but there is of necessity a wall between religion and science so it is necessary for us to examine as best we can the motivations and, of course, the physical and psychological well-being of those who come forward, volunteering to help others, even when it means giving up parts of their being, perhaps even their lives.
But having done that, perhaps we can over time become comfortable with -- even grateful for -- those few in our midst who would lay down their lives for the least of us.
All men are brothers, as they see it. Or as Rhonda DeLaremore put it: "We are all a lot more alike underneath than some of us want to believe."
Next: "Angels From God:" Stories of Organ Donation
---This story originally appeared in slightly different form in the Winter 2000 issue of "Chimera", the journal of the American Society of Transplant Surgeons.
