A Year Of Grief, Changes

By Sarah Avery and Michael Easterbrook

Staff Writers

February 8, 2004

LOUISBURG--The bedroom holds impossible promise, as if Jesica Santillan could walk in at any moment and plop down on her bunk bed amid a zoo of stuffed bears. Unchanged despite the passage of a year, the room is where Magdalena Santillan most mourns the loss of her frail teenage daughter, whose death from a botched heart-lung transplant last February at Duke University Hospital changed organ transplantation procedures nationwide, stained the prestigious hospital's reputation and helped sidetrack congressional efforts to limit awards in medical malpractice lawsuits.

Even as the child's death resulted in so many changes in medical care and public policy, Magdalena Santillan remains overcome by a mother's grief. As she stands in Jesica's room, full of the remains of her daughter's life, she acknowledges the emptiness.

"I was very angry at God," Santillan said, "knowing that I was never going to have my daughter with me again."

Save for one horrible mistake a year ago Saturday, Jesica Santillan might have lived as a triumph of community support and medical science -- an immigrant child doomed to die from a congenital heart defect, rescued by a heart-lung transplant.

One call late at night on Feb. 6 triggered events. A boy in the Boston area had died and his parents offered his organs for donation. The national system that allocates organs sped into action, matching the donor to eligible recipients' blood type and other factors.

Jesica's name did not appear among those the computer flagged as possible recipients. She was not a match. Instead, Jesica's surgeon, Dr. James Jaggers, suggested Jesica as a recipient after rejecting the organs for a patient who was on the list. Jaggers later said he assumed the organ procurement agencies would check to see if Jesica were a match. Still practicing at Duke, he declined to be interviewed for this article.

But the local organ procurement agency, Carolina Donor Services, did not have access to Jesica's medical information, although it did verify that she was on the national registry.

And so the organs were approved for Jesica. Duke doctors flew up to retrieve the donor organs, and Jaggers implanted them in Jesica. The mismatch went undiscovered until it was too late.

A Legal Wrangle

The mistake might never have been publicly known, except for a wild card named Mack Mahoney. A family benefactor, Mahoney worried that Duke was moving too slowly and quietly to find replacement organs -- he wanted to alert the media to inspire a donation directly to Jesica.

Duke wasn't interested in publicity. Last summer, Dr. William J. Fulkerson, the hospital's chief executive officer, acknowledged that the medical center would not have publicly disclosed the transplant error had Mahoney remained silent. As it was, more than a week passed before Duke publicly admitted the mismatch.

When it did, it faced a ferocious storm of publicity. National media descended on Durham as Jesica clung to life awaiting new organs. On Feb. 20, against unbelievable odds, a second heart and lung were donated. At first, Jesica seemed to do well, but the damage was too much to overcome. She died Feb. 22.

Magdalena Santillan's anger over the care Jesica received at Duke soon became a legal wrangle that continues. No lawsuit has been filed, but Santillan has hired a Texas lawyer, Howard L. Nations, to negotiate a settlement with Duke. If that fails, she has another year to file a wrongful death lawsuit.

Even before Jesica was buried, though, her potential legal case became a political cause celebre. As Congress debated whether to limit jury awards in medical malpractice lawsuits, patients' advocates pointed to her care as a reason to block the effort. Legislation passed in the House but stalled in the Senate. President Bush again called for award limits in his recent State of the Union address.

A similar battle occurred in North Carolina, and the issue will be revived when the General Assembly reconvenes this spring.

As the legal issues simmer, acrimony between Santillan and Duke Hospital continues. Last spring, the medical center announced it would establish a $4 million fund in Jesica's name to benefit the families of other Hispanic children seeking treatment.

Santillan initially supported the idea, but later, at the urging of Mahoney, asked that Jesica's name be removed from it. Mahoney said he objected to the fund's structure, which he said gave Duke a new revenue source for programs it already offered. Duke has put the fund on hold.

The incident is one of many in which Mahoney has exerted influence. A house builder, Mahoney has been a central figure in the Santillans' situation since 2000, when he read of Jesica's plight in a Louisburg newspaper. Touched by the family's efforts to raise money for treatment, he established a charity called Jesica's Hope Chest to benefit her and other sick children.

The charity continues, and in recent months, Santillan has worked there as a volunteer. Having immigrated from Mexico illegally, she cannot hold a job while she waits for the U.S. Immigration and Customs Enforcement agency to rule on her status. Immigration officials said her case is pending, but she faces a complicated battle to avoid deportation.

Meanwhile, Mahoney and his wife, Nita, support Santillan and her two children. Santillan, 38, is separated from Melecio Huerta, who returned to Mexico in August. Huerta is not Jesica's father, although Mahoney originally identified him as such. He said Huerta's return to Mexico was not related to an arrest in March on misdemeanor assault charges involving Santillan. Those charges were dropped in June.

Santillan said she wants to stay in the United States, because she wants her children to have a better life. And she could never leave Jesica, who was laid to rest in a mausoleum at Lancaster Memorial Park in Louisburg.

The inscription reads: "Yesica 'Jesica' Lizeth Santillan. Recuerdo de tu mamy y hermanos. Te queremos mucho."

Translation: "Remembered by your mommy and siblings. We love you a lot."

Fixing The System

Despite the loss of her daughter, Santillan said she continues to believe in organ sharing. She recently made public service announcements to encourage donations, especially among Spanish-speaking ethnic groups.

The spots have run occasionally on area television stations, but they were undertaken without the sponsorship of Carolina Donor Services or any other procurement agency. It's unclear whether Carolina Donor Services, or the national organ network, would be a party to a lawsuit if Santillan were to sue.

Lloyd H. Jordan Jr., executive director of Carolina Donor Services, said he could not speculate about legal action. But he welcomed Santillan's advocacy. When Jesica died, Jordan and other organ procurement officials feared that donations would fall amid the controversy.

That didn't happen, but the agencies drew criticism for enabling organs to go to an illegal immigrant. Others wondered how she won a second heart-lung combination when she was so sick.

Joel Newman, a spokesman for the United Network for Organ Sharing, said the ethical issues are best left for hospitals and doctors to resolve. The network permits up to 5 percent of transplants for foreign nationals, but the average is more like 2 percent, Newman said. Foreign visitors donate organs at about that rate.

Other procedural problems have been addressed by organ network officials in an effort to guard against the kind of organ mismatch that killed Jesica. In June, leaders at the national network addressed 15 areas where there were weaknesses in the system, Newman said.

One of the major fixes was requiring an extra step in blood-type verification, so that more than one person makes this crucial check. Additionally, the network now bars doctors from requesting organs for patients not listed as possible recipients, which is what Jaggers had done for Jesica.

Dr. Peter K. Smith, a heart surgeon and chief of Duke's division of thoracic and cardiovascular surgery, said doctors did that because the organs quickly deteriorate, so time is pressing to make a match: "If you wait a half-hour and decline, you've just made the organs a half-hour older."

Fostering Safety

As Jesica's death has strengthened the nation's organ donation system, it has also transformed Duke. Even before Jesica got her second operation, the medical center announced that doctors would triple-check for blood compatibility before transplants.

Further investigations led to other changes -- some demanded by regulators, others by the hospital. After an inspection by the federal agency that oversees Medicaid and Medicare spending, Duke was in jeopardy of losing federal funding.

The prestigious medical center suffered additional embarrassments when a follow-up inspection found problems in its kidney dialysis program. And a hospital accrediting agency lowered Duke's standing for several months, before returning it to full accreditation last summer.

After an internal probe, Duke decided to merge the pediatric heart transplant programs with the adult division. It required that doctors and nurses stop and check blood typing at two critical stages before transplantation. Surgeons were connected via home computers to patient information.

"The investigation of the case revealed that there were many more possible ways that an error could have been made," Smith said. "We found defects that never caused problems, but had the potential to create problems."

Aside from procedures, other things changed, Smith said, "This was a very profound event for Duke. And the entire culture at Duke has changed because of it."

Hospital administrators began looking at errors differently, he said, taking the onus off individual doctors or nurses, while examining whole systems to find weaknesses and devise fixes. Fulkerson, the hospital CEO, said the effort is continuing and involves an industrial model called Six Sigma that has been used by Ford Motor Co. and General Electric.

He said the goal was to "foster a culture of safety."

But the goal was challenged with two other patients' injuries at the hospital last summer. In June, a baby was burned in a flash fire in an operating room. Then in August, another baby was burned by hot air in an incubator.

Coming on top of the Jesica Santillan debacle, the incidents prompted unprecedented severity by the federal Centers for Medicare and Medicaid Services, which came within a day of yanking the hospital's reimbursements -- worth $332 million, or 41 percent of Duke's annual revenue.

The hospital brokered a deal, promising to retrain staff, improve safety measures in its intensive-care nursery, and establish a hierarchy of administrators and doctors to oversee patient safety.

"Whatever we do, we're unable to prevent 100 percent of errors," Fulkerson said. "Even in the context of focusing on safety, errors will occur. ... I'm really proud of this place and proud of the people who work here. Extraordinary things happen here every day."

Somber Celebration

Jesica's 18th birthday, the day after Christmas, was supposed to have been special -- a passage to adulthood. Jesica had always wanted a mariachi band, happy tunes to celebrate, and so Magdalena Santillan arranged for a group to play at the grave site.

The music was somber.

"Jesica always wanted to be famous," Mahoney said. "It's just a shame she had to be famous this way."

Mahoney had a marble bench installed in front of Jesica's mausoleum, because Santillan spent so much time there. She still visits at least five times a week. It was actually easier for her to go there than to walk into Jesica's room -- surrounded by what's left of the young girl's life.

In recent months, Santillan has gotten better about the room. She can sit awhile, but she can't bring herself to change a thing. As she pulls a pair of Jesica's jeans from the closet, Santillan weeps.

Behind her, on the bed, sits a silent audience of Jesica's stuffed bears. It's a well-chosen crowd. Each one has a heart -- held in its hand, dangling from its ear, embroidered on its chest.

Staff writer Sarah Avery can be reached at 829-4882 or savery@newsobserver.com.

Copyright © 2004 The News & Observer Publishing Company.

This article posted March 6, 2004.