Misdiagnosis leads to transplant deaths

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Still mourning their 15-year-old son, who died a year ago, the family of the Sag Harbor teen have been dealt another devastating blow, learning that two people who were recipients of his donated organs have died and two others are undergoing chemotherapy, stricken by the same disease that killed their son.

Doctors originally believed Alex Koehne succumbed to bacterial meningitis at Stony Brook University Hospital on March 30 last year. But a month later, parents Jim and Lisa Koehne were told that their son actually had a rare form of lymphoma—one that is, according to the case report in the American Journal of Transplantation’s January issue, “highly aggressive” and devastating to organ recipients.

Sag Harbor attorney Ed Burke Jr., who is representing the family, confirmed on Wednesday that the Koehnes had been trying to contact the recipients of Alex’s organs for some time, and finally learned the bad news just two months ago. The terrible chain of events became public last weekend when, following a one-year anniversary memorial service for Alex, the story broke and gained national attention.

The Koehnes do not have plans to sue Stony Brook at this time, Mr. Burke said, and confirmed that the New York State Department of Health had absolved the hospital of any wrongdoing in the case. “We are pursuing answers to several questions,” he said.

Mr. Burke and the Koehnes had just completed interviews with CNN and “Good Morning America” in Manhattan on Wednesday morning. The attorney said one question the Koehnes are asking is why the transplants took place when the cause of Alex’s death was still questionable.

According to the medical journal case report, Alex’s liver, kidneys and pancreas were donated. The liver went to a 52-year-old man who had hepatitis and liver cancer through New York University Medical Center, but he died from the same disease that killed Alex 116 days after the transplant. A 36-year-old woman with diabetes received the boy’s pancreas at the University of Minnesota hospital also developed the rare lymphoma. The diseased organ was removed 40 days after the transplant, but the woman died.

Test results showed the two kidney recipients had signs of the disease and both have undergone chemotherapy. The report states a 46-year-old male was tolerating treatment, and a 64-year-old male is “doing well.”

“But for Jim and Lisa’s insistence that an autopsy be done, we would have never known [Alex] had lymphoma,” Mr. Burke said, noting that New York University Medical Center and the University of Minnesota, which transplanted the diseased organs, have changed protocol to help avoid future mishaps.

The medical journal notes that cancer is rarely passed through organ transplants, and has been reported “only a handful of times,” but the Koehnes want to help other families and prevent more tragedies. “That’s one of the reasons they’re are out talking to the media,” Mr. Burke said, adding that it hasn’t been easy, but the family is holding up extremely well.

Representatives of major television news outlets met Mr. Burke and the Koehnes for a press conference in Sag Harbor on Monday, and before long their story became national news.

“Alex is pulling the strings on this,” said Mr. Burke as he stood next to the Koehnes and explained their resolve. The teen grew up wanting to help people and hoped to work in civil service with the police or fire department or become a Coast Guard pilot. That fact inspired his parents to donate his organs in the first place and in spite of the tragic results, Mr. Burke said the Koehnes are confident that answers will come and people will benefit from them.

“It’s through him that they’re given the strength to talk and help other families,” Mr. Burke said, relaying the Koehnes’ hopeful message. Mr. and Ms. Koehne extended their thanks to the East End communities, “who embraced them from day one,” lending support when Alex got sick and after his death. The community held fund-raisers throughout the year for “Alex’s Promise Foundation, ” which raised money to help children fight life-threatening illness through Saint Jude’s Children’s Hospital and for research on rare brain cancers. The foundation, AlexsPromise.org, also created drama and football scholarships for deserving students who share a love for the activities Alex enjoyed while attending Pierson Middle and High School in Sag Harbor.

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