Although a Duke University surgeon has taken responsibility for the transplant mix-up that killed a 17-year-old Mexican girl last month, experts are increasingly questioning why Jesica Santillan was able to get the organs in the first place.
Santillan received a heart and lungs from a donor with an incompatible blood type during a Feb. 7 transplant operation at Duke University Hospital. That incompatibility set in motion a death spiral that not even a second heart-lung transplant could reverse.
Santillan received the second set of organs in accordance with national regulations, but the way in which she got the first organs is being investigated by the United Network for Organ Sharing, called UNOS, a national group that oversees organ transplants. That's because Santillan's name was not on the computer-generated list of those qualified to get the organs.
After a conference call last week to discuss the case, members of UNOS's Membership and Professional Standards Committee agreed to issue a notice today to all organ recovery groups, reminding them of the rules for matching donated organs with potential recipients, said spokesman Joel Newman.
While patients who need transplants are often described as being on a waiting list, the reality is slightly different.
There is no master waiting list for organs, with patients ranked from top to bottom for each type of organ. Instead, patients like Santillan are all listed in a national computer registry that includes details about what organs they need, their blood types, how sick they are and other pertinent information.
A list is created only when a particular organ or set of organs is donated.
The list, which is drawn from the large database, includes only the patients who are medically appropriate candidates for the organ. Blood type, the size of the organ and the distance between the donor and the recipient are all factors that can determine which patients wind up on the list, known as a "match run." The match run then ranks the order in which patients are to be offered the organs, in accordance with a variety of factors, including their health status.
Two Duke patients other than Santillan were on the match run for the organs she ultimately received, but one wasn't ready for transplant and a size incompatibility prevented the other from receiving them. After a Duke surgeon, Dr. James Jaggers, turned down the organs for one of the patients, he asked donation officials if he could have the organs for Santillan.
Santillan was not on the original match run because she had the wrong blood type for the donated organs. It isn't clear why neither Jaggers nor the New England Organ Bank, which was offering the organs, knew about the blood type mismatch before the organs were put into her body.
UNOS also is looking into whether other potential recipients who were on the match list were passed over in the process, Newman said.
Sticking to the match run not only can prevent blood type mismatches, but also helps guarantee that the scarce supply of organs donated for transplant is handled fairly, said Brian Broznick, executive director of the Center for Organ Recovery and Education in O'Hara.
"Every organ that's allocated we have a match run for, and the recipient is identified somewhere on that match run," Broznick said. "That's the only way to make sure that, frankly, you're not black-marketing the organ."
But Howard Nathan, executive director of the Gift of Life Donor Program in Philadelphia, said that while it's unusual, it's not unheard of for donated organs to be sent to a patient whose name isn't on the match run.
Sometimes an organ recovery group will contact all patients on the match run but not find someone who can use the organ at that particular time. When small organs are involved, which was likely the case with Santillan, there might not be many names on the match run in the first place.
In those instances, a recovery group will then scramble to place the organs with borderline patients.
Sometimes, for instance, a patient might not show up on the match run because his weight is just outside the ideal range for a particular organ. Yet that patient's surgeon might elect to use the organ anyway, Nathan said.
Another scenario is that temporary health problems might have made a patient ineligible for transplant at the precise moment when the computer created the match run. But in the hours spent trying to place the organ, that patient's condition could have improved, Nathan said.
Organ donor officials keep looking for possible recipients, Nathan said, because "the ultimate sin is to not utilize the [donor] family's gift of life."
Broznick said his group, called CORE, also goes beyond the match run during those circumstances.
But CORE always re-runs the list, he said. If that had been done in Santillan's case, her name would again have failed to show up on the list because of her incorrect blood type.
Newman said the investigating committee is considering whether UNOS policies need to be changed because of the Santillan case.
The organ procurement network's response is what has been missing from the story of the girl's death, said Arthur Caplan, a bioethicist at the University of Pennsylvania.
"I haven't heard much about the system end of this and I think that's important," he said. "I don't understand how the organs got from the donor program to Duke in the first place."
The New England Donor Bank might have had very good reasons for sending the organs to Duke, Broznick said. But there isn't enough public information now to judge the matter.
"I think someone needs to have a press conference and say 'OK, here's what happened from A to Z,' " he said.
Christopher Snowbeck can be reached at csnowbeck@post-gazette.com or 412-263-2625.
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