Apr. 2, 2008— -- 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."
Part of the reason that episodes like this are so rare is that waves of screening protocols are in place to prevent diseased organs from being passed on to recipients. Before transplanting any organ, doctors routinely screen donor tissues for viral and bacterial infections. They will also conduct comprehensive patient and family histories to determine whether the donor had dangerous behaviors, such as a history of intravenous drug abuse, or whether they may have exposed themselves to less obvious infections. Even vague symptoms, such as unexplained fever or headache, are investigated.
"The system does everything reasonable to prevent disease transmission," said Dr. Vivian Tellis, head of the kidney transplant program at Montefiore Medical Center in New York.
But the precautions, while comprehensive, are not fail-safe. As in this case, doctors do not always know the exact reasons behind a patient's demise until their organs have been transplanted. And doctors have long recognized that the immune system suppression that organ recipients must undergo in order to be able to accept donated organs puts them at an increased risk of developing cancer from transplanted organs.
"Before it is diagnosed, cancer usually exists at some point as a microscopic focus, which often precludes attempts to detect it early and frustrates clinicians worldwide," said Dr. Jason Schwartz, assistant professor of transplant surgery at the University of Utah in Salt Lake City. "It is easy to see that if a transplant occurred from a donor with microscopic disease, it would be possible to transmit cancerous cells to a recipient."
And cancer is just one of a sea of possibilities when it comes to the diseases that can potentially come along with a donated organ.
"The important thing to remember is that all the transplanted organs are used organs and come from other individuals who have died," Loyola University's Brems said. "Therefore, it is inevitable that an organ will get used from a donor who has an undiagnosed disease."
Complicating the situation is that decisions about organ transplantation often need to be made very quickly, as precious donated organs do not survive long past their donors unless they are implanted into a recipient's body shortly after the donor's death.
"Once death has occurred, there is a finite amount of time before irreversible damage occurs in the organs," Tellis, of the Montefiore Medical Center, said.
But the immediate nature of the procedure still begs the question: Could anything have been done differently to further protect the lives and health of those slated to receive Alex's diseased organs?
Not likely, Tellis noted. She said that it appears the 15-year-old had all the signs of meningitis, and that doctors treated him for this condition. The normal battery of screening tests would not have pointed to his cancer. And even the autopsy results that revealed the true nature of his illness came only days after his death — by which time his organs, if left untransplanted, certainly would not have been viable.
"Could the diagnosis have been made earlier? That depends upon what tests were done, and how they were interpreted," Tellis said. "Conceivably, even with CT scans and/or MRIs, the diagnosis could have been obscured.
"If the diagnosis could not have been made earlier, I cannot see how this tragedy could have been prevented, since an autopsy would impose unacceptable time requirements on organ viability."
Schwartz, of the University of Utah, added that though he could not say for sure whether the hospital could have done anything differently, as he does not have access to the medical records, "These cases do happen, however, and it is not necessarily because someone is at fault."
Still, the case has already changed protocol at New York University Medical Center, where two of Alex's organs were implanted into recipients. According to local reports, the hospital has put in place guidelines that require stronger proof of bacterial meningitis before a deceased patient can be considered an organ donor. The University of Minnesota, which along with N.Y.U. was involved in the operation on Alex's pancreas, has made a similar policy change.
"There's been a change of policies from hospitals involved with the recipients of Alex's organs. This is where there's somewhat of a silver lining. We can bring attention to this, see what those changes are and help further this cause and families involved who allowed this change," said the Koehnes' attorney Ed Burke.
With luck, the new measures will shave down the already slim chances of such tragedies in the future. But no change in protocol will make organ transplantation procedures completely risk-free.
"[The public] should realize that transplantation is a risky business which is not guaranteed to be risk-free," said Dr. David Cronin, director of liver transplantation and the Transplantation Intensive Care Unit at Yale-New Haven Hospital in New Haven, Conn.
"We are taking organs from a dead person and putting them into another person to attempt to save their life. Many people don't like to shake hands, share a glass, etc. In transplantation, we are taking an organ from one into another. I think we have gone beyond sharing a glass with a stranger."
The Koehnes said they hoped their tragedy could serve as a warning call to others."If it saves one person, we've done our job," Lisa Koehne said.
Click here to learn more about Alex's Promise, a scholarship foundation set up in his memory.
Imaeyen Ibanga contributed to this piece.