GARDEN CITY, N.Y. - Alex Koehne had a love for life, and always wanted to help people.
So when his parents were told that their 15-year-old son was dying of bacterial meningitis, the couple didn't hesitate in donating his organs to desperately ill transplant recipients.
"I immediately said, 'Let's do it'," Jim Koehne recalled. "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.
Autopsy discovery
It turned out that Alex did not die of bacterial meningitis, but rather a rare form of lymphoma that wasn't found until his autopsy, and apparently spread to the organ recipients. The Long Island couple was told that two of the recipients have died, and two others had the donor kidneys removed and are getting cancer treatment.
The revelation has led two hospitals to revise transplant procedures, although the state Health Department found that no one was to blame. Experts say the possibility of getting cancer from an organ donor is extremely rare: Only 64 cases have been identified in a national study of 230,000 cases, according to the United Network for Organ Sharing.
"A 15-year-old boy's organs are a gift from the Almighty," said transplant surgeon Lewis Teperman, noting the majority of organ donors are much older than Alex. "Usually the organs from a 15-year-old are perfect. In this case, they weren't."
Teperman is the director of transplantation at New York University Medical Center, where two of the transplants were done and lead author of a report on the case.
Last March, Alex was taken to Stony Brook University Hospital on Long Island after treatment at another hospital for nausea, vomiting, severe back and neck pain, seizures and double vision. Doctors told his parents they suspected he had bacterial meningitis — an infection of the fluid surrounding the spinal cord and brain — although tests didn't reveal what bacteria caused it.
He was treated with antibiotics but died on March 30.
The Koehnes requested an autopsy. They were told a month later that Alex had actually died from a rare form of non-Hodgkin's lymphoma, a blood cancer which affects fewer than 1,500 patients in the U.S. annually.
"Our jaws dropped," Jim Koehne recalled. "We walked out of there crying."
Jim and Lisa Koehne (pronounced KAY-na) later learned that a 52-year-old man died of the same rare lymphoma about four months after receiving Alex's liver. The couple said they were also told a 36-year-old woman who received Alex's pancreas also developed lymphoma and died.
Two patients who received the kidneys are undergoing cancer treatment and are faring well, according to the report in the January issue of the American Journal of Transplantation.
All four recipients were notified immediately of the autopsy results and got chemotherapy, the report said. None have been publicly identified.
The transplants were done at Stony Brook, NYU Medical Center and the University of Minnesota, according to Newsday, which first reported on the case.
The report's authors noted a diagnosis of bacterial meningitis does not preclude donating organs because the recipients can be given antibiotics to prevent infection, but they concluded "a more thorough evaluation of the donor" should be done when there is any doubt.
"Tumors, especially lymphoma, can masquerade as other causes of death, and may be missed in potential donors," they wrote.
Teperman, who was not involved in the case, said the review did not fault anyone who made the incorrect diagnosis.
Rare situation
"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."
But, he added, this case is so rare that it would have been difficult for anyone to predict what might have happened, and that physicians acted in good faith in trying to harvest organs for desperately ill recipients.
NYU and Minnesota now follow the recommendation for additional tests for bacterial meningitis.
Stony Brook officials said they followed organ donor network guidelines, but cited federal privacy laws in declining to specifically discuss the Koehne case.
A review by the state Health Department "did not find flaws in policies, procedures and actions at Stony Brook" involving Alex's case, said agency spokeswoman Claudia Hutton.
The New York Organ Donor Network, which coordinated the transplants, issued a statement of sympathy for the family. The network pointed out that 22,000 patients received life-saving organ transplants in the U.S. in 2007, and another 6,411 patients died while awaiting organ donations.
The Koehnes have not sued, although their attorney, Edward Burke, said they are considering all legal options.
At 5-foot-11, Alex was already as tall as his father. He was in the church youth ministry and was a lineman for the East Hampton High Bonackers junior varsity team.
"He loved football," his dad recalled. "He would watch ESPN every morning and then come downstairs and tell me all about it."
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The Koehnes have started a foundation to fund cancer research, which is receiving strong community support.
"Alex had more friends than we knew," his father said.
Despite the outcome, he and his wife believe organ donors save lives, and have no regrets about 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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