When 15-year-old Alex Koehne died a year ago, his parents, Lisa and Jim Koehne, made the selfless decision to donate his organs so that others could live. But with this noble gift came a deadly disease.
"After he passed away, and we asked for his organs to be donated, we asked them would they please do an autopsy because at that time they still couldn't give us [the reason he died]," Lisa Koehne said on "Good Morning America" today. "We needed to know."
Doctors had diagnosed Alex as having suffered from bacterial meningitis when the Sag Harbor, N.Y., teen died on March 30, 2007. They believed that the infection had been behind the sickness that began with only a sudden high fever and a backache a few weeks before.
Bacterial meningitis, though serious, did not preclude organ transplantation after death. According to a report on the case, published in the January issue of the American Journal of Transplantation, Alex's liver went to a 52-year-old man, his pancreas to a 36-year-old woman, and his kidneys to a pair of men, ages 46 and 64.
But it was only after the transplants were performed that autopsy results revealed Alex had a deadly cancer known as anaplastic T-cell lymphoma — not bacterial meningitis.
"We were shellshocked by the whole situation," Jim Koehne said on "GMA" today. "We had a lot of questions."
Patient privacy laws prevented the Koehnes from ever meeting the recipients of their son's organs.
"Two things we did think of [once we learned the truth], one, the recipients, are they OK? Are they all right?" said Lisa Koehne, who added the organ recipients' doctors had be notified about the situation before she and her husband learned the truth.
"They said they'll be monitored and looked after," Jim Koehne said doctors told him.
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.
"[To] the two that lost family members, we send our sympathies to them," Lisa Koehne said. "Our hearts go out to them."
Fortunately, there were survivors. The recipients of Alex's kidneys had the organs removed and underwent chemotherapy. Both are reportedly still alive.
"We're very concerned about them and wish them a healthy recovery," Jim Koehne said. "We're sorry."
As tragic as the incident was, the New York State Department of Health concluded after a thorough investigation that Stony Brook University Medical Center, where Alex's donation took place, met all of the necessary standards set for organ donation. The medical center noted in a statement that the episode represented a tragedy, and that every procedure involving organ donations or transplants at the institution "is handled according to the guidelines of United Network for Organ Sharing and are used by all hospitals in the United States."
"This is extremely rare," said Dr. John Brems, chief of intra-abdominal transplantation and hepatobiliary surgery at Loyola University in Chicago. "I have been performing liver transplants for 22 years, and this is only the second time I have heard of something like this."