When 15-year-old Alex Koehne died a year ago at Stony Brook University Medical Center, his parents donated his organs; and although Alex was diagnosed with bacterial meningitis, his organs were deemed healthy for transplantation. A month later, the Koehne’s were told by Stony Brook that Alex had actually died of a rare lymphoma, a diagnosis in which his organs would not have been transplanted given the disease’s transmission strength. The Koehne’s recently learned two patients who received Alex’s organs died last year of the same rare lymphoma and two other’s were undergoing chemotherapy.
The specialized medical teams involved in transplant procedures must move quickly to assess the suitability of organs for transplants and speed is even more critical given the growing organ waiting lists. In the months after their son’s death, the Koehne’s remained in constant contact with the group that coordinates organ donations in the metropolitan area, the New York Organ Donor Network and hoped one day to be in touch with the recipients of their son’s organs. They only learned of the recipients’ deaths when they called the group themselves in January after they heard a reporter was making inquiries and wanted to understand why these deaths were kept from them for so long.
Matthew Cody, chairman of a Stony Brook patient-care monitoring board said he was surprised he only heard of the case in January. According to Stony Brook, “You should know that patients within any transplantation program throughout the United States—both organ donors and recipients—sign privacy, risk, consent, and confidentiality agreements, over and above those which protect their privacy under the statutes of the Health Insurance Portability and Accountability Act (HIPAA), to further protect their identities, health, rights, and health care information.” Under transplant protocols, Stony Brook is not technically responsible for the healthiness of organs donated by its patients; the responsibility for that lies with the donor network which bases its decisions on the patient’s medical records, tests, and information gathered from the family.
Alex’s case began late in February of 2007 when he began suffering from nausea, vomiting, severe back and neck pain, seizures, and double vision. His parents took him to Southampton Hospital twice; his medical records show he was diagnosed there with “probable viral meningitis” and treated with antibiotics, even though viruses do not respond to antibiotics.
From 1994 to 2006 nationwide, among more than 230,000 major-organ recipients, there were 64 cases in which people developed cancer as a result of their transplant, according to the United Network for Organ Sharing, a national nonprofit organization that facilitates organ sharing. As for lymphomas, they have been transmitted through transplants a handful of times. A diagnosis of bacterial meningitis does not preclude donating organs because the recipients can be given antibiotics that will prevent infection, said Dr. Lewis Teperman, director of transplantation at NYU. But in the rare cases when lymphoma-diseased organs have been transmitted, the results have been “devastating” because organ recipients must be on drugs that suppress their immune systems. The drugs keep them from rejecting the new organs, but also make them vulnerable to infection and disease.
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