Historic Lung Transplant Draws a Mixed Reaction : Medicine: Some ethicists criticize parents’ role as donors in operation to save daughter from cystic fibrosis.

Gently, gravely, the doctor broke the news.

Your daughter is dying, he told Barbara Sewell. Cystic fibrosis--which had ravaged Stacy Sewell’s tiny body for all her 22 years--would claim her life within days, two or three at most. The disease had devastated the young woman’s lungs, destroying her capacity to breathe. Stacy’s heart was overworked; soon, it would give up.

There is, Dr. Vaughn Starnes went on, one slim hope, but it lay in a highly experimental, first-of-its-kind operation. Barbara Sewell and her husband, Jim, would be required to donate a portion of their own lungs to save the life of their child. The surgery would be relatively safe but controversial, Starnes said. And there was only a 50-50 chance it would work.

“Can we do it now?” the mother asked. The doctor replied: “I want you to think about it, but time is of the essence.” The woman’s answer came without hesitation: “What is there to think about?”

With that, the Sewell family of Antelope Valley plunged into science’s uncharted waters. Two weeks ago, Starnes and a team of surgeons at USC University Hospital took one of five lung lobes from Stacy’s 49-year-old mother and one from her 55-year-old father and transplanted them into the young woman.

To awe-struck observers, the operation--which marked the first time a living donor had been used to treat a cystic fibrosis patient and the first time two people had served as donors in a living lung transplant--represents the noblest act of parental devotion.

But as Starnes predicted, it has stirred controversy.

Some medical ethics experts have criticized the transplant, saying too many people were put at risk. And the operation is being viewed with caution by Cystic Fibrosis Foundation officials, who would prefer to see less intrusive therapies developed to cure the disease. They say live donor transplants must remain the option of last resort, used only if no lungs are available from those who have volunteered to donate organs after their death.

The surgery also demonstrated a bit of derring-do on the part of Starnes, a renowned young surgeon who had been lured away from Stanford University last July to help USC establish itself as a major center for organ transplants. With this one operation, the 41-year-old doctor put his reputation on the line.

If it worked, Starnes knew, he would be praised as a brilliant pioneer. But if it failed--if, heaven forbid, Stacy died on the operating table--he would be branded a hot-dogger, gunning for publicity for himself and his new employers.

The jury, of course, is still out; the true measure of Starnes’ success will be revealed only as Stacy’s condition improves. “Nobody is going to jump on the bandwagon until we see what happens in L.A.,” said Robert J. Beall, a Cystic Fibrosis Foundation official.

But the surgery has already set off a wave of requests from parents who--faced with a shortage of available donor lungs--want to do for their ill children what the Sewells did for Stacy. This has fed the concerns of medical ethicists, who say the novel USC procedure may have put parents in danger without adequate guarantees of success.

“I’m a little uncomfortable about putting two donors at risk instead of one for an operation that had not yet been demonstrated to be effective,” said Dr. Mark Siegler, director of the Center for Clinical Medical Ethics at the University of Chicago. “I mentioned to my students that this was probably the first surgery that had a potential mortality rate of 300%.”

Although Starnes replies that the risk for the parents was minimal, Siegler and other ethics experts add that the surgery raises questions about “informed consent,” the principle that potential donors must be thoroughly informed of the risks before volunteering. When a parent donates an organ to a dying child, these experts say, emotional ties make objectivity impossible.

Arthur Caplan, director of the University of Minnesota’s Center for Biomedical Ethics, said: “This kind of surgery is very serious stuff, so serious that in some countries the parents would not have been allowed to donate on the grounds that no person should be allowed to undergo a life-threatening procedure to save the life of another. . . . I believe in some cases, the parents would say, ‘Well why don’t you just kill me and take my parts?’ ”

Ethical debates aside, the operation has, at least for the meantime, saved Stacy Sewell’s life. And for her parents, there is nothing ambiguous or questionable about that.

Their daughter’s skin is pink now; for years she had been a sickly bluish-gray. She can walk around the intensive care unit and ride a stationary bicycle for 12 minutes. Two weeks ago, it took all her energy just to breathe. Doctors say there is a 75% chance she will live for another year and a 65% chance she will live for another three.

“My husband and I gave this child life twice,” Barbara Sewell said through tears the other day, in her first interview, “and even if it’s only for a year, that year will be precious. It’s just so wonderful to have our daughter still alive.”

From the moment Stacy was born April 1, 1971, the Sewells knew that there was something drastically wrong with their little girl. Every breath was a struggle.

Doctors ran all kinds of tests. At first they thought Stacy had breathed before coming out of the birth canal, perhaps sucking in some secretions that had clogged her lungs. The baby spent the first three months of her life in the hospital before doctors determined that she had cystic fibrosis.

Cystic fibrosis affects 30,000 Americans and is considered universally fatal. It is inherited, found in a recessive gene that must be present in both the mother and father. Neither Barbara nor Jim Sewell knew they carried it.

The disease causes sticky mucus to form throughout the body, clogging the lungs and the digestive tracts. Eating is very difficult; Stacy Sewell weighs just 95 pounds. But what usually kills CF sufferers is the recurrent pneumonia that breaks down the delicate architecture of the lungs’ tiny air sacs, creating thick white scar tissue and pus-filled gaps in their place.

Stacy’s early childhood was difficult. Life revolved through the hospital door. She slept under a plastic tent that misted her with oxygen. She took special medication to help her digest food. A common cold could be deadly--it could turn into bronchitis and possibly pneumonia.

The doctors said Stacy would not live past 1 year of age. About the time of their daughter’s first birthday, the Sewells found themselves picking out funeral clothes and making burial arrangements. They selected a white satin dress and a pink satin casket and a plot in the San Fernando Valley, in a quiet spot under a shady tree. And they braced themselves for the worst.

But Stacy made it past her first birthday, and her second, her fifth and her 10th; in early adolescence, her health seemed to improve. The family moved several times--from Palms to Reseda to Canoga Park to Quartz Hill in the Antelope Valley--in search of better air. Jim Sewell recalls with fondness the camping and beach trips he and his daughter took--always with a generator in tow in case Stacy needed special equipment to breathe. Stacy was determined, say those who know her, not to let the illness run her life. To her parents’ horror, she insisted on running track. She traveled alone to Germany to visit her older sister. She missed nearly three months of high school during her senior year but graduated on time. She took courses at a community college in Antelope Valley and worked part time as a sales clerk at Mervyn’s.

“She was the type of person who never let you know she was ill,” said the store manager, Ed Skvarca. “She was a gal that wouldn’t show any weaknesses.”

In the late 1980s, Stacy’s health took a bad turn. She became ill more and more frequently, and she developed allergies to the antibiotics. Last August, she spent the entire month in the hospital. The doctor who had treated her all her life told Stacy that if she became sick again, he might not be able to save her.

He suggested she go see Starnes.

The doctor had made a big name for himself in organ transplant work. At Stanford, he had pioneered lung and heart-lung transplant procedures in children. Of the six lung transplants that had been performed using lobes from live donors, Starnes had done four.

Starnes told the Sewells that Stacy would be a good candidate for a transplant operation. And then the waiting began.

According to the United Network of Organ Sharing, which maintains organ transplant waiting lists, there are 1,010 names on the list for lungs. The average wait is 291 days.

It was into this trap that Stacy Sewell fell. By Christmas, her situation had turned dire.

“We knew we were losing her,” her father recalls, “and the doctors had been very clear that it would only take one more bug that they couldn’t kill on time. And she knew it, too.”

Starnes, meanwhile, was wrestling with his conscience. He toyed with the idea of a live lung transplant, but he worried about putting the university’s fledgling program at risk. And he feared that Stacy, being so critically ill, might die during the operation.

Still, he says had grown fond of her and believed that he had something to offer her. So he proposed the transplant to his chief of surgery and to the board that reviews experimental procedures. They gave him the go-ahead.

“Stacy’s a fighter,” Starnes said. “She didn’t want to die. There’s something about the human spirit, you know, you get kind of caught up in that. You say, ‘She’s not giving up, why should I?’ ”

The surgery, which took place the morning of Jan. 29, was actually three operations at once. Stacy and her parents were placed in adjacent operating rooms on the hospital’s fourth floor. A runner was stationed between the rooms to keep the doctors on an all-important schedule.

While Starnes removed Stacy’s diseased lungs, an operation that took about 90 minutes, his colleagues began to “harvest” the lobes from her parents--the left lower lobe from her father and the right lower from her mother.

Her mother’s lobe was delivered first. Starnes sewed it in on Stacy’s right side, hooking up the airways, arteries and veins. That took about 30 minutes. As soon as he completed that lung, the left lobe arrived, and Starnes sewed it in, too. There were, surprisingly, no hitches. Starnes said: “It was pretty amazing. It was like we had done 50 of these.”

With the surgery complete, doctors removed Stacy from the heart-lung machine that had taken over her functions during the operation. Immediately, the new lobes went to work. And for perhaps the first time in her life, Stacy Sewell could take a deep breath.

The Breath of Life

On Jan. 29, doctors at USC University Hospital performed historic living lung transplant surgery on Stacy Sewell, a 22-year-old cystic fibrosis sufferer, in which her mother and father each donated a lung lobe. It was the first time a living donor was used to treat a cystic fibrosis patient, and the first time that two people served as donors in the new medical arena of living lung transplants.

THE PROCEDURE

A. The surgery involves three simultaneous operations.

B. Patient and parents are placed in adjacent operating rooms.

C. Doctors begin to remove both of patient’s diseased lungs, a 90-minute operation.

D. Other doctors begin to “harvest” left lower lobe from her father and right lower lobe from her mother.

E. After both of patient’s lungs are removed, her mother’s lobe is delivered. Surgeon sews it into patient’s right side, hooking up the airways, arteries and veins. Procedure takes about 30 minutes.

F. Left lobe from her father arrives, and surgeon repeats procedure.

G. Heart-lung machine is unhooked; patient breathes on her own.

THE AFTERMATH:

* Parents are recuperating well, with no long-term problems anticipated.

* Patient will have to take medication to help prevent her body from rejecting new lungs.

* Patient remains in intensive care and faces months of physical therapy.

* Cystic fibrosis should not attack her new lungs.

* Doctors say there is a 75% chance she will live one year and a 65% chance she will live three years.