When Lisa Koehne’s son Alex lay in a bed at Stony Brook University Hospital two years ago this month, she sensed there was something wrong other than what the doctors were telling her. Alex, had been diagnosed with bacterial meningitis and after 17 days at the hospital, died on March 30, 2007.
But what Lisa and her husband Jim learned weeks later was that it was actually a rare and extremely aggressive form of cancer —Â anaplastic central nervous system T-cell lymphoma —Â that took their son’s life.
To compound their grief, they learned several months later that two of four patients who received organs from Alex had died, the organs themselves infected with the cancer.
Beginning early last year, lawyers for all four organ recipients started a series of suits against the medical center as well as Southampton Hospital, where Alex had been treated initially as an emergency patient, and where meningitis was first diagnosed by Dr. Robert Semlear, the family physician at the time, who is also named in the suit.
This week the Koehnes also joined the suit, arguing simply, the doctors and hospitals should have done more.
“We never got any answers from Stony Brook or Southampton,” said Jim Koehne in an interview Tuesday.
“We knew we would have to give depositions, and we asked ourselves if we wanted to go through this all again,” said Jim. “And we said, ‘yes we do, we want to know what happened’.”
Also named in the claims, which allege negligence in Alex’s misdiagnosis, are New York University Hospital and one of its physicians, Dr. Thomas Diflo, who performed one of the transplants, and doctors Kimberly Fenton, Salma Syed, Daniel Sloniewski and Mary Anderson —Â all associated with Stony Brook —Â and neurologist Norman Pflaster, of Southampton.
Alex was initially admitted to Southampton Hospital by Dr. Semlear, where he stayed for a week, and was released with antibiotics and pain killers, according to Mr. Koehne. Then days later, Alex’s extreme pain and sudden seizures drove the family to take him to Stony Brook, where doctors maintained the same bacterial meningitis diagnosis.
Southampton Hospital spokesperson Marsha Kenny said the hospital does not comment on issues of litigation.
Lauren Sheprow, spokesperson for Stony Brook University Medical Center responded “we do not comment on matters before the court or on any specific patient due to state and federal patient privacy laws.”
She added: “In general, every matter that involves organ donations or transplantation at SBUMC is handled according to the guidelines of UNOS (United Network for Organ Sharing), which has federal authority over organ donation and transplantation in the U.S., and New York Organ Donor Network, the local authority over organ donation as designated by UNOS.”
“Every organ donation case by its very nature is surrounded by tragic circumstances, and we grieve with families as they struggle to make a very personal and private decision at a very painful time,” she wrote in an email. “We admire the strength, compassion and commitment of those who help save the life of another through donation, even as they are suffering the pain of the loss of their own loved one.”
The firm of Dankner & Milstein initiated the first claim in January 2008 on behalf of Gerardo Trueba of the Bronx, who received one of Alex’s kidneys. The other kidney recipient was James Kelly of Mount Sinai, L.I. Both men, after learning of the true diagnosis, had the donated kidneys —Â which had been infected with cancer —Â removed. Both men underwent chemotherapy, which appears to have been successful said Adam Kauffman, an associate at Dankner & Millstein. Both men, however, also are on dialysis, and probably will be for life, he said.
The other recipients included Kitman Lee, a 52-year old hepatitis B cirrhosis patient of Brooklyn, who received Alex’s liver at NYU Medical Center. He also contracted the same cancer that killed Alex and died 116 days later. The recipient of Alex’s pancreas, 36-year old Jodie Lynn Shierts of Pequot Lakes, who had type 1 diabetes mellitus, had the donated pancreas removed, but died as a result of lymphoma.
The complaints allege that the hospitals failed to rule out meningitis through tests, the long onset of Alex’s illness, and the failure of antibiotics to cure it, and failed to seek any other cause for the illness. In addition, the complaints say the organs were released without confirmation of cause of death.
The Koehnes’ complaint is based on “the failure to diagnose their son’s true condition,” said firm partner Edward Milstein.
“As a result, their son didn’t receive treatment,” said Milstein, “he didn’t have the chance to benefit from treatment.”
Milstein added, however, they are not alleging that, even if Alex had received a prompt diagnosis or treatment, he would have survived.
Jim Koehne remembered this week when they were standing by their son at Stony Brook, his wife Lisa looking at Alex’s eyes and noting how one eye rolled a different way.
“’There’s something else wrong’,” he remembers her saying.
It was a mother’s intuition he felt was ignored.
Â “I really feel the diagnosis was handled incorrectly,” said Mr. Koehne. “They could have looked in a different direction.”
Mr. Koehne acknowledges the cancer was so virulent that he and his family may never have had much more time with Alex.
“But even if it was another day, or two days,” said Mr. Koehne. “And Lisa could have said goodbye to her son.”
Above: Jim and Lisa Koehne remember their son Alex with a foundation, Alex’s Promise, which raises money for brain cancer research. Last year they were able to donate $10,000 to St. Jude’s Children’s Hospital.