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But a month after he died, the Koehnes were told an autopsy revealed it wasn't meningitis that killed Alex, but an extremely rare form of lymphoma -- cancer. They learned the tragedy had spread -- a 52-year-old man who received Alex's liver died of lymphoma; a 36-year-old woman who received his pancreas also died; and two kidney recipients showed signs of lymphoma, and are now recovering after undergoing chemotherapy.
It is the nightmare scenario in the world of organ donation. How could the doctors have given the misdiagnosis of meningitis? They never found bacteria, but they were confident because he had all the symptoms.
"Unfortunately, in 10-to-15 percent of cases, you don't recover the bacteria," said Dr. Louis Teperman, the director of transplantation for New York University.
Organ donors must have their blood tested for HIV, hepatitis, and more. But for some diseases - including cancer - doctors rely on medical records. And the records simply showed no signs of cancer.
"It is a rare disease," said Dr. Teperman. "You don't test for rare diseases."
In a statement, the New York Health Department said, "we did not find flaws in policies, procedures, and actions" at Alex's hospital.
It does little to ease the Koehnes' pain.
"I've been through this without my son every day, now they have to go through this. Now five families are suffering," said Lisa Koehne.
After the operation, the recipients of the organs all showed evidence of the cancer. The recipient of Alex's liver underwent three cycles of chemotherapy before finally succumbing to the tumors brought about by the lymphoma. The woman who received Alex's pancreas initially responded well to treatment, but she too later died. Two other recipients are reportedly recovering from chemotherapy.
