Undiagnosed cancer passed to transplant recipients

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Undiagnosed cancer passed to transplant recipients

BY RIDGELY OCHS | ridgely.ochs@...

March 30, 2008

When 15-year-old Koehne died one year ago today at Stony Brook University

Medical Center, his parents decided to donate his organs because he was the kind

of boy who always wanted to help others.

had been diagnosed with bacterial meningitis, but his organs were deemed

healthy enough for transplantation.

" All we wanted was some good to come out of it, " said his mother, Koehne.

A month later, however, and her husband Jim were told by Stony Brook that

had actually died of a rare lymphoma. That diagnosis would have precluded

his organs being transplanted because the disease is readily transmitted.

As things turned out, it was. The Koehnes learned about two months ago that two

of the patients who had received 's organs died last year of the same rare

lymphoma that killed their son, and that two other recipients were undergoing

chemotherapy.

" Something was not handled correctly and it eats me alive every day, " said Jim

Koehne. The Koehnes, who live in Sag Harbor, say they are painfully aware that

they are only one of five families affected by the extraordinary chain of

events. " We don't need to cause others to suffer. "

Cancer being passed through transplanted organs is rare - it happens only a

handful of times each year. The state Department of Health recently concluded an

investigation at Stony Brook and at New York University Medical Center, which

received two of the organs, and cleared both hospitals. " We did not find flaws

in policies, procedures and actions at Stony Brook concerning the case of the

15-year-old boy with transplanted organs, " said Health Department spokeswoman

Hutton. However, NYU and the University of Minnesota, which also

transplanted one of the diseased organs, have since changed their policies and

now require stronger proof of bacterial meningitis.

As experts consider the case that has rocked five families, four of whom

believed they had been given another chance at health and life, they say it

highlights the difficulties inherent in transplantations. The specialized

medical teams involved must race the clock to assess the suitability of organs

for transplants. Speed is even more critical given the growing waiting list for

organs. And transplantation, though now commonplace, remains an evolving

science.

Hutton called the case " a belly blow " for those who work in the field because

they so often succeed in extending the lives of people with few or no options.

" This is a tragedy on many levels, " she said. " It's every person's worst

nightmare. "

Koehne called the Health Department's findings " unbelievable. "

" How can that be when people have died? " she said. " It doesn't make sense to me.

How do you give organs not knowing what the child died of? "

Not told of recipients' deaths

Something else bothers the Koehnes: In the months after their son's death, they

said, they were in constant contact with the group that coordinates organ

donations in the metropolitan area, the New York Organ Donor Network. They had

hoped one day to be in touch with the recipients of their son's organs. But they

said they learned of the recipients' deaths only when they called the group

themselves in January after they heard a reporter was making inquiries. They are

asking why the recipients' deaths were kept from them for so long. So are those

involved with the hospital's oversight. Cody, the chairman of a Stony

Brook patient-care monitoring board - set up with fanfare last year after three

children died at a pediatric unit - said he was also surprised he had only heard

of the case in January.

Stony Brook said it could not speak about the case. " 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, " the

hospital said in a prepared statement.

Under transplant protocols, Stony Brook is not technically responsible for the

healthiness of organs donated by its patients. That responsibility lies with the

donor network. The network bases its decisions on the patient's medical records,

tests and information gathered from the family.

, a spokeswoman for the New York Organ Donor Network, said she was

" very familiar with the case " but could not say more.

" Our hearts go out to the donor family, " she said. She said that the network had

done " all that it was required to do. "

The diagnosis and treatment of Koehne is laid out in an article in the

January issue of " The American Journal of Transplantation. " The article names

neither nor the hospital, but a medical source knowledgeable with the case

said the hospital was Stony Brook, and his parents confirm the article describes

's case. The article details the treatment of a 15-year-old organ donor who

died of a rare lymphoma after first being diagnosed with bacterial meningitis.

The ages of the recipients match those the Koehnes were given by the organ donor

group.

'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 that he was

diagnosed there with " probable viral meningitis " and treated with antibiotics -

despite the fact that viruses do not respond to antibiotics.

Koehne said her son was worried. " Mommy, am I going to die? " she recalled

him asking.

" No, buddy, " she replied. " They are going to fix you up. "

Moved to Stony Brook

He was transferred to Stony Brook on March 13. Although tests continued to show

no bacteria, he was diagnosed there with " partially treated bacterial

meningitis, " according to the journal. Doctors issue such diagnoses for patients

who have been treated with antibiotics and who show the symptoms of meningitis,

which range from a stiff neck to seizures, but when they are still unable to

find any definitive sign of bacteria.

Partially treated bacterial meningitis is " a very uncommon diagnosis, " said Dr.

Schaffner, an infectious disease specialist at Vanderbilt University

Medical Center in Nashville, Tenn., and a spokesman for the Infectious Diseases

Society of America. He added that he was not speaking specifically of the Koehne

case.

On March 30, died. Within hours, his kidneys, liver and pancreas were

donated. His liver and a kidney went to New York University Medical Center. The

pancreas went to the University of Minnesota, and the other kidney was

transplanted at Stony Brook, according to the medical source.

Although they were told their son had bacterial meningitis, the Koehnes were

disturbed that doctors were never able to confirm the diagnosis. So, they asked

that an autopsy be done on his brain, which was swollen and inflamed.

A month later, the results of the autopsy found that he did not have bacterial

meningitis. Instead, he had anaplastic large cell lymphoma, a rare form of

non-Hodgkin's lymphoma most common in children and young adults. About 750 to

1,500 will be diagnosed in the United States with the disease this year,

according to the American Cancer Society. The cancer society described the

lymphoma as fast-growing but often responsive to chemotherapy.

As soon as Stony Brook learned of the brain autopsy results, it contacted those

involved in the transplant of 's organs. Tests were ordered for the four

recipients:

The liver recipient, a 52-year-old man, who already had hepatitis and liver

cancer, was found to have acquired the same rare lymphoma as . He died of

lymphoma 116 days after the transplant, according to the journal article. As is

customary with such articles, the names of the patients were withheld.

The 36-year-old woman who received the pancreas at the University of Minnesota

also developed lymphoma, although the pancreas was removed 40 days after the

transplant. The Koehnes said they were told by the donor network that the

pancreas recipient also had died.

The two kidney recipients also had the organs removed. Both kidneys showed signs

of lymphoma, and the recipients, a 46-year-old man and a 64-year-old man, have

undergone chemotherapy. The article says they appear to be doing well.

Cancer rarely passed on

Acquiring cancer through organ transplantation is rare. 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 only a handful of times, the journal article said.

Experts say 's case points to the challenges doctors face, especially given

an ongoing shortage of organs, in determining whether an organ is healthy enough

to be transplanted. Statewide, more than 6,000 people are on the waiting list

for kidneys, another 1,960 are awaiting livers and 123 are on the list for a

pancreas.

In 's case, doctors faced especially unusual time pressure. In 95 percent of

transplants - those in which a person is declared brain dead - the organs can be

kept viable, giving the transplant team days to work with. But 's was a

" cardiac death. " That meant doctors had literally minutes to begin the process

of procuring the organs.

And the clock keeps ticking once the organs are procured. After they are removed

from the donor, a liver and pancreas remain viable for transplant from 12 to 18

hours; kidneys are viable up to 48 hours, according to UNOS.

" There is a tension with every transplant, " said Dr. Rubin, a transplant

infectious disease expert at Harvard University. " There is the desire to do good

and the limitations of transplant technology ... You can't always tell anything

is going on [in terms of disease] although we're a lot better than we used to

be. "

Dr. Wormser, chief of infectious diseases at New York Medical College in

Valhalla, agreed. " Many cases leave you scratching your head because you don't

have a clear-cut diagnosis, " he said. But Wormser said that, based on the

journal article, " it doesn't seem like bacterial meningitis would have been my

diagnosis - nor would have lymphoma, " he said.

Organ donors must have their blood tested for HIV, hepatitis, syphilis and other

bacteria or viruses. But for other transmissible diseases or medical conditions,

including cancer, doctors check medical records or interview relatives,

according to UNOS.

Immune systems suppressed

A diagnosis of bacterial meningitis does not preclude donating organs because

the recipients can be given antibiotics that will prevent infection, said Dr.

Teperman, director of transplantation at NYU and lead author of the

article.

But in the rare cases when lymphoma-diseased organs have been transmitted, the

results have been " devastating, " the journal article said. One key reason: 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.

Teperman, who referred a reporter to the article for details of the case,

concurred. " This is a rare event, " he said, " but it is important for the

transplant community to be aware of it. "

In the article, Teperman and his co-authors say that more thorough testing and

imaging could have improved the chance of a correct diagnosis.

The authors noted that although the teenager's tests were negative for bacterial

meningitis, there was no indication of a further test of his cerebral spinal

fluid. " No organism was identified, putting the diagnosis of bacterial

meningitis in doubt, " the authors said.

The authors, from NYU and the University of Minnesota, said it is now " our

standard policy not to accept organs from individuals with reported bacterial

meningitis without the identification of the organism. "

When asked if any similar policy changes had been instituted at Stony Brook, Dr.

Greene, the hospital's quality control officer, said he could not

comment on the case. But he said: " We try to learn from every circumstance which

could lead to positive outcomes. "

Asked the same question, , of the organ donor network, said: " This is

currently a legal case and we are not able to comment on legal cases. "

The parents, who have not filed any lawsuits against the hospitals or organ

donor network, said they asked doctors at Stony Brook during 's nearly three

weeks there if they were certain they had the correct diagnosis.

" Our question is if they had so many uncertainties, why did they let this

happen? " said Jim Koehne. " Why did Stony Brook let this happen? "

Koehne said she and her husband were " dumbfounded " when they met with Stony

Brook officials last April and learned that had died of cancer.

" My only question was, " she said, was 'What about the recipients?' "

Started with a headache

Feb. 26, 2007 Koehne, below, calls mother to say he has headache and pain

in his shoulder.

March 4 At 7 p.m., parents, Jim and , concerned is not getting better,

take to Southampton Hospital. He is treated for dehydration and returns

home.

March 5 passes out in bathroom, slurs his words. His mother calls

ambulance; he is admitted to Southampton. He is initially diagnosed with viral,

or aseptic, meningitis. Nevertheless, he is put on three antibiotics (used for

bac- teria, not viruses).

March 9 goes home.

March 13 He begins having seizures and is taken to Southampton. It's decided to

send him to Stony Brook University Medical Center. There, he is diagnosed with

partially treated bacterial meningitis, according to an article published in

January in the American Journal of Transplantation.

March 30 dies at 10 a.m. Family asks that a brain autopsy be done. Four of

his organs are donated: his liver, pancreas and kidneys.

Late April Koehnes meet with Stony Brook about autopsy. They learn that had

died of a rare lymphoma.

Early May Pancreas is removed from recipient. She later dies.

Early May First kidney recipient has the transplanted organ removed. He was

reported to be doing well.

Mid-May Second kidney recipient has the transplanted organ removed. He was

reported to be doing well.

July Liver recipient dies.

Late January 2008 Koehnes learn two recipients have died and other two are being

treated for cancer.

March 25 The case is first presented to Stony Brook hospital's Quality

Assessment Review Board.

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