In a sad story of the best of intentions turned to tragedy, four organ recipients have been diagnosed with cancer as a result of organs they received from a 15-year-old donor who unknowingly had a rare form of the disease.
15-year-old Alex Koehne loved life and had a passion for helping people. He was in the church youth ministry and was a lineman for the East Hampton High Bonackers junior varsity team. At 5-foot-11, he was already as tall as his father.
“He loved football,” his dad, Jim Koehne, recalled. “He would watch ESPN every morning and then come downstairs and tell me all about it.”
Upon receiving the tragic news that their son was dying of bacterial meningitis, Alex’s parents decided they would donate his organs to help others who were desperately ill and in dire need.
“I immediately said, ‘Let’s do it’,” Mr. Koehne told the Associated Press. “We both thought it was a great idea. This is who Alex was.”
A year later, their dream that Alex’s spirit might somehow live on has become a nightmare.
An autopsy revealed that Alex did not die of bacterial meningitis, but rather from a rare form of lymphoma that apparently spread to the organ recipients. The Koehne’s were told two of the recipients had died, with the other two having had the donor kidneys removed and undergoing cancer treatment.
The two hospitals involved have since revised their transplant procedures, although the state Health Department did not assign any blame for the event.
Experts insist the possibility of getting cancer from an organ donor is extremely rare. According to the United Network for Organ Sharing, only 64 such cases have been identified in a national study of 230,000 cases.
“A 15-year-old boy’s organs are a gift from the Almighty,” transplant surgeon Lewis Teperman told the Associated Press, adding that the majority of organ donors are much older than Alex.
Teperman is New York University Medical Center’s director of transplantation and lead author of a report on the case. Two of the transplants were performed at the Medical Center.
“Usually the organs from a 15-year-old are perfect. In this case, they weren’t.”
Alex was taken to Stony Brook University Hospital on Long Island last March after receiving treatment at another hospital for nausea, vomiting, severe neck and back pain, seizures and double vision. Doctors told Alex’s parents they suspected the teen had bacterial meningitis, an infection of the fluid surrounding the brain and spinal core, although tests did not reveal which bacteria was causing the infection.
Alex was treated with antibiotics, but passed away on March 30.
The Koehnes requested an autopsy, and were informed a month later that Alex had not died from bacterial meningitis, but rather from a rare form of non-Hodgkin’s lymphoma, a blood cancer affecting fewer than 1,500 patients in the U.S. each year.
“Our jaws dropped,” said Jim Koehne. “We walked out of there crying.”
Jim and Lisa Koehne learned later that a 52-year-old man died of the same rare lymphoma four months after receiving Alex’s liver, as did a 36-year-old woman who received Alex’s pancreas. The two remaining patients, who received kidneys, are undergoing cancer treatment and are doing well. Although non have been publicly identified, all four organ recipients were notified immediately of the autopsy results and given chemotherapy.
According to the Newsday, which first reported on the story, the transplants were done at Stony Brook, NYU Medical Center and the University of Minnesota. Both facilities now perform additional tests for bacterial meningitis.
The Newsday report said a bacterial meningitis diagnosis does not preclude organ donation because recipients can be given antibiotics to prevent infection. However, the report added that “a more thorough evaluation of the donor” should be completed whenever there is any doubt.
“Tumors, especially lymphoma, can masquerade as other causes of death, and may be missed in potential donors,” the authors wrote.
Although not involved in the case, Teperman said the review did not fault anyone who made the incorrect diagnosis.
“No one was able to say they could have figured out that this diagnosis was lymphoma,” he said. “We are recommending that if the reported case is bacterial meningitis, maybe wait and get more cultures, possibly don’t take the organs.”
Teperman said physicians acted in good faith in trying to harvest organs for desperately ill recipients, and the case is so rare it would have been difficult for anyone to predict what might have happened.
A state Health Department review “did not find flaws in policies, procedures and actions at Stony Brook” involving Alex’s case, according to agency spokeswoman Claudia Hutton.
Stony Brook officials said they followed organ donor network guidelines, but declined to specifically discuss the Koehne case, citing federal privacy laws.
The New York Organ Donor Network, which coordinated the transplants, issued a statement of sympathy for the family, emphasizing that although 22,000 patients received life-saving organ transplants in the U.S. in 2007, another 6,411 died while awaiting organ donations.
The Koehnes attorney, Edward Burke, said the couple is considering all legal options.
For now, the Koehnes have established a foundation to fund cancer research, which is receiving strong support among the community.
“Alex had more friends than we knew,” Mr. Koehne said.
Despite the tragic outcome, the Koehne’s still believe organ donors save lives, and do not regret their decision.
“We would absolutely, positively do it again,” Jim Koehne said. “I haven’t done it yet, but I am definitely going to sign up myself.”
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On the Net:
A report about the case was published in the January issue of the American Journal of Transplantation. The full report can be viewed here.
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