The calls began going out from Boston late on the evening of Thursday, Feb. 6, and continued well into the following morning. Somewhere in the six-state region covered by the New England Organ Bank a young person was dying, and the bureaucratic machinery devised to salvage life from death sprang into action. A coordinator entered the patient's vital statistics into the database maintained by the United Network for Organ Sharing (UNOS), which generated a ranked list of possible recipients for the useful organs. Hearts and lungs begin to deteriorate after just four to six hours outside the body, so the patients' location was one of the key factors the UNOS program considered, along with medical condition, body size and blood type. A heart in Miami may be useless in Seattle. A child's heart cannot keep a full-grown man alive.
But the computer program does not control for fate. The closest potential recipients turned out, for various reasons, to be a poor match for these particular organs. Thus, working its way down the list, the New England center came to two patients awaiting hearts at Duke University Hospital, in Durham, N.C. It contacted the agency that handles transplants for that part of the country, Carolina Donor Services, which in turn called the doctors at Duke. Neither patient was a suitable recipient, but one of the doctors, James Jaggers, Duke's highly regarded chief of pediatric cardiac surgery, asked if the organs could be available for another of his patients--Jesica Santillan, a 17-year-old girl with a dying heart and deteriorating lungs. Jesica was not on the computer match list, but the New England donor bank, which by that time may have been running out of names within a safe radius of travel, agreed to let Jaggers have the organs for a rare heart-lung transplant. Early that Friday, Jaggers assembled his transplant team, brought Jesica to the hospital and dispatched two surgeons with a representative of Carolina Donor Services by jet to "harvest" the donor heart and lungs. No one thought to inquire why Jesica's name hadn't been on the list in the first place. But they all assumed that surely this cutting-edge medical technology, these highly trained specialists, would not have been deployed by mistake.
Until that moment, Jesica had been on the brink of a miracle. She had come to Duke all the way from Jalisco state in Mexico, where her father, Melecio, was a truckdriver. She had been sick from infancy with a heart disorder that the doctors in rural Mexico were unable to correctly diagnose, much less treat. Her parents did all they could. They raised $5,000 for a "coyote" to smuggle them across the border into New Mexico, then made their way to Louisburg, N.C., where relatives were living among a large population of Mexican migrants. Speaking no English, they nevertheless came to the attention of the local newspaper, The Franklin Times, whose publisher, Gary Cunard, heard about Jesica from a teacher. Cunard championed her cause in a column that caught the eye of a local businessman, Mack Mahoney, who was so moved by the account of her life in a trailer without air conditioning that he paid for one himself, and went on to found a charity to pay for her health care. The family brought her to Duke's world-class medical center, they got her on the transplant list and her mother, Magdalena, spent hours praying to one of her favorite saints, the Virgin of Guadalupe. And just at the moment her prayers seemed to have been answered, Jaggers emerged from the operating room with the mystifying news of a dreadful mistake: Jesica, blood type O, had been given the organs of a type A donor, a mismatch that is almost invariably fatal. On Saturday, after a desperate second transplant operation, doctors confirmed that Jesica had suffered irreversible damage from bleeding into her brain, and took her off life support. Her story had turned into an anti-miracle, a humbling lesson in human fallibility.
Jesica's case also put a face on the intractable issues of tort reform and medical malpractice. The most recent study found that medical errors cause between 44,000 and 98,000 deaths in the United States annually. Those figures, from a 1999 report by the Institute of Medicine, are likely to be revised substantially upward in studies due out this spring, according to Dr. David Classen, a patient-safety expert at the University of Utah. Few mistakes, though, are as stunningly obvious as the one that killed Jesica. The "tragic error" that hospital CEO Dr. William Fulkerson acknowledged 10 days after it happened occurred despite an elaborate system of safeguards meant to prevent precisely such a mishap. "This just doesn't happen," says Dr. Lewis Teperman, director of transplantation at New York University--although it actually did happen in 1991 and again in 1994. Not only that, but at the same hospital, Oregon Health Sciences in Portland, where, by coincidence, Jaggers was a surgical resident from 1988 to 1993. Duke's blunder occurred while engineers were still tracing the tenuous chain of bad luck and questionable judgments that led to the Columbia shuttle disaster. In comparison, what happened at Duke was akin to accidentally launching the shuttle with its nose pointing down.
She was a small, frail child, barely over five feet and not much more than 80 pounds. Her diagnosis from Duke was "restrictive cardiomyopathy," a condition in which the chambers of the heart become abnormally stiff, unable to fill and pump blood properly. "She was skin and bones," recalls Minnie Shirey, a migrant specialist for the Franklin County schools who visited the Santillans in March 1999, shortly after they arrived in Louisburg. The family of five was living in a relative's trailer parked near the "cucumber shed," where farmers brought their produce to sell to a pickle company. "The other two children looked healthy, but Jesica looked like she couldn't put one foot in front of the other. She was holding on to the furniture to walk." She strengthened enough to start seventh grade that fall. Her Spanish teacher at Louisburg High School, Liana Henderson, remembers her as quiet and diligent. "Her clothes were neat and pretty," she says, "pants with little jackets to match and those chunky-heeled shoes." Her parents, meanwhile, had found work, Melecio as a construction worker and Magdalena, eventually, as a janitor at Louisburg College. Their exact immigration status was unclear, although a spokesman for the family said they had applied for residency. Their mentor, Mahoney, claimed that the INS had attempted to deport them at one point but desisted after an appeal by former North Carolina senator Jesse Helms. A former aide to Helms confirmed last week that the office had had "some involvement" with the Santillan family, but provided no details.
Jesica's biggest break was winning over Mahoney, a displaced Texan who speaks Spanish. The 55-year-old contractor became not just a fund-raiser but a surrogate grandfather to the girl, taking her on shopping sprees to Wal-Mart and letting her use a room in the comfortable house he shares with his wife. His charity, Jesica's Hope Chest, claims to have raised roughly $100,000 toward medical bills for Jesica and half a dozen other local children. Mahoney has a knack for attracting controversy, or, as his supporters call it, attention. "Mack Mahoney does not give up," said David Raines, a board member of the charity. "The reason [Jesica] got the first transplant was because of Mack Mahoney's aggressiveness with Duke Hospital, crying and begging." Understatement is not his way. After expressing confidence in Jaggers last Thursday, he announced on Friday: "To me, if the little girl dies, they murdered her." According to Mahoney, a phone call from Sen. Elizabeth Dole helped persuade hospital administrators to go along with his plans for publicizing Jesica's plight, in hopes of attracting a second donor. An aide to Dole says she just made a routine courtesy call to express her support. By Saturday afternoon Mahoney had left Durham for home, and the role of family spokesman was assumed by their lawyer, Kurt Dixon.
But without Mahoney, almost certainly, Jesica's plight would never have been known beyond her family. Although the mistake was discovered while Jesica was still in the operating room, four days later hospital spokesman Richard Puff made no mention of it to one of the few journalists then following the story, Joe DeSantis of The Franklin Times. "Her doctors will continue to monitor her progress in getting past the initial organ rejection," Puff blandly told him. "Initial rejection is somewhat typical for most transplant patients."
By then, of course, Jesica was fighting for her life, and her situation was anything but typical. No one knows exactly what happened in Operating Room No. 7 that evening, except those who were there--about 10 or so, including Jaggers and at least one other surgeon to help him, most likely several residents, an anesthesiologist, a perfusionist to run the heart-lung machine and several nurses. The donor heart and lungs--a single organ bloc weighing a little over two pounds, a dusky pinkish gray in color--would have arrived, typically, triple-bagged inside an ordinary picnic ice chest. If UNOS rules had been followed, the container would have been prominently labeled with the donor's blood type: A. But sources say the rule is often disregarded for hearts, which unlike livers and kidneys always travel with a human escort. The New England center would say only that "the blood type was included in the packet of information that was sent with the donor organs."
To save time, transplant surgeons will sometimes remove the diseased organs even before the new ones have arrived, but Duke insists that Jesica's organs were not removed until the donor heart and lungs were in the OR. Surgery began at 4:50 in the afternoon, and proceeded smoothly. But about five hours later, with the new organs in place but her chest still open, Jaggers took a call from the lab running routine blood tests. The technician told him the new organs didn't match Jesica's blood type. The antibodies in Jesica's blood were already attacking the cells of her new heart and lungs.
Surgeons who have seen acute organ rejection describe it as frightening. "It's a horrible, horrible reaction," says Dr. Satoshi Furukawa, director of the cardiopulmonary transplant program at Temple University Hospital in Philadelphia. The heart would turn "an ugly, purplish, gangrenous color," while the lungs would be "an angry red," and "the organs would look like they've been beat up, punched. It must have been a nightmare." This is an extreme version of the normal incompatibility problem posed by any organ transplant--but there are no drugs strong enough to counter it. Jesica was almost certainly doomed from that moment.
She struggled on, though, in a light coma most of the time, occasionally responding to her mother's voice by scrunching her face. Because of her extremely critical condition, she was given priority for a new transplant, which finally came through last Thursday. Sister Betty Bullen of Our Lady of the Rosary Catholic Church in Louisburg was with the family after the second surgery and recalls Magdalena's mood: "She was extremely tense and worried, sitting on the edge of her seat, rubbing her hands. She would pray out loud in Spanish." Not even the hopeful report from the operating room relieved her, until she could see for herself that Jesica was alive and off the heart-lung machine. About a dozen relatives joined in a prayer "of thanks and gratitude and praise to God."
But the gratitude was premature. Two transplant operations had taken a horrific toll on Jesica's body. On Friday she began bleeding into her brain, and by early Saturday afternoon all brain function had ceased. Her parents, though, who had fought so long and hard and come so close to saving her, "expressly told Duke that they did not wish to remove Jesica from life support," Dixon told a press conference. But the prerogative belongs to the hospital. Doctors kept her on a ventilator until about 5 p.m. so family and friends could say goodbye. Her medications were discontinued, and at 5:07 her heart stopped beating; three minutes later the machines were switched off. "The family did not protest," a hospital spokesman said. As the law requires, Jesica's parents were asked if they wanted to donate Jesica's organs for transplant. Her corneas, at least, may have been medically useful. They declined, the hospital reported--although Renee McCormick, a spokesperson for Jesica's Hope Chest, maintains that because of language difficulties and her parents' emotional state they may not have understood the request.
Medicine had done its best, and also its worst: now the legal system will have its chance. Jaggers admitted the mistake directly to the family right after it happened. "Jim Jaggers came right out and said there's been a terrible mistake," his fellow surgeon Robert Anderson said proudly. "He had the guts and the courage to go out and tell the truth." In a videotaped statement released by the hospital after Jesica's death, Jaggers said: "As Jesica's surgeon I take responsibility for those errors. And I take responsibility for the entire team." But the precise nature and details of the responsibility are very much in dispute. A spokesperson for Duke claims that when Jaggers asked Carolina Donor Services whether the organs were available for Jesica, he took its assent to mean that it had checked for compatibility. Jaggers "does not recall ABO [blood] typing being discussed," but CDS begs to differ: "We called Duke, and gave Duke the donor blood type and other information from New England," CDS president Lloyd Jordan told NEWSWEEK.
This was all unfolding against the backdrop of a malpractice-insurance crisis that has led to doctors' strikes in several states, and proposals by President George W. Bush, among others, to set strict limits on what juries could award for "noneconomic" losses--victims' pain and suffering or the survivors' loss of companionship. By coincidence, on Feb. 5 North Carolina state Sen. Robert Pittenger proposed a bill to cap these verdicts at $250,000. Obviously, Jesica's case didn't help his cause, but, he gamely contended, "while there are very tragic cases that have caused great trauma and harm, we cannot allow a whole [medical] system to be destroyed" by the cost of malpractice insurance. But Dixon's law partner, Frank Cassiano, was scornful. "If they kill this little girl," he said on Friday, "it's off the charts, and $250,000 doesn't begin to cover the damage."
And, finally, the philosophers will get to weigh in on the question of how to allocate the ultimate scarce resource, living human tissue. Having botched one operation, did the doctors owe Jesica a second chance at life? Or should someone have pointed out what, in retrospect, seems obvious: that her chances of surviving a second operation were almost nil? "Heart-lung transplant, that's a big grab," says NYU's Teperman. "That's a very rare transplant. Someone needs a heart, someone needs lungs, you can transplant three people." In Ontario, Calif., a 28-year-old woman named Luba Kobzeff watched the tragedy unfold in North Carolina with a distinct sense that Jesica may have gotten the second chance she deserved instead. "I am waiting for a heart and two lungs," Kobzeff said, between drafts of oxygen from the tanks she is tethered to. She suffers from a rare lung defect called Eisenmenger's syndrome. "My doctor told me that I have a small chest and I would probably need organs from a child. I said, 'You know what? That could have been me. I've been waiting three years already'."
So there you have it: a perfect storm of suspicion, jealousy and anger, touched off by one careless moment in the life of an exemplary surgeon. And for one little girl who used to like to dress up in her chunky-heeled shoes and go shopping at Wal-Mart, a miracle that fell just short.