This is a terrible story that starts with a tragedy and ends in an equally sad way. It centres around a boy name Alex Koehne, a teen who was diagnosed with bacterial meningitis and apparently died from the disease in March of last year.
His parents made the decision to donate his organs to others as a way of paying tribute to their lost son. It was a generous and agonizing moment, but they knew they were doing the right thing. “I immediately said, ‘Let’s do it’,” Jim Koehne recalls. “We both thought it was a great idea. This is who Alex was.”
The operations were performed in New York City and grateful donors accepted Alex’s vital organs, giving them the chance at a life he would forever be denied. It should have had a happy ending.
It turns out the teen didn’t die from the ailment doctors thought had killed him. He’d had a rare form of lymphoma instead, and now his organs have caused others to develop the dangerous ailment.
A 52-year-old recipient who received his liver died four months after getting the new organ. The cause: lymphoma. A 36-year-old woman who gratefully accepted the pancreas suffered the same disease and succumbed. And two patients who took Alex’s kidneys have now had them removed and are fighting their own life and death struggle against the cancer.
How could such a thing happen? The New York State Health Department has ruled no one was to blame, because all of Alex’s symptoms fit the textbook descriptions of meningitis and that’s what doctors treated him for. It wasn’t until after his organs had been harvested and reused and an autopsy performed that the truth became clear.
And by then, it was too late.
“Our jaws dropped,” Koehne remembers. “We walked out of there crying.”
Experts say the chances of this kind of thing happening are extremely rare. There have only been 64 cases ever recorded out of the 230,000 studied by the United Network for Organ Sharing.
Even doctors are stunned by the tragedy. “A 15-year-old boy’s organs are a gift from the Almighty,” transplant surgeon Lewis Teperman notes. “Usually the organs from a 15-year-old are perfect. In this case, they weren’t.” His hospital, New York University Medical Center, performed two of the transplants.
Alex received antibiotics that should have stopped the spread of infection to his organs – but that was only for the meningitis. They do nothing for cancer, and no one knew he had it at the time. Teperman’s study admits “a more thorough evaluation of the donor” should be done when there is even the slightest hint of doubt.
“Tumors, especially lymphoma, can masquerade as other causes of death, and may be missed in potential donors,” his report makes clear.
“No one was able to say they could have figured out that this diagnosis was lymphoma,” the physician concludes. “We are recommending that if the reported case is bacterial meningitis, maybe wait and get more cultures, possibly don’t take the organs.”
He wants to make it clear this kind of incident shouldn’t scare people away from either donating or receiving needed organs. He calls it a rare case and insists it’s very unlikely to happen again, especially now that the hospitals involved have revamped and tightened their screening processes.
And what of Alex’s parents, who now have to live not only with his death but the effect on four other families? They’ve hired an attorney and are considering legal action, but have so far not sued anyone. For now, they’re trying to keep their boy’s memory alive in a different way, starting a foundation to fund cancer research in his name.
And they say despite the outcome, they have no problems with organ donation. “We would absolutely, positively do it again,” Jim Koehne agrees. “I haven’t done it yet, but I am definitely going to sign up myself.”
Photo courtesy: Alex’s Promise