Medical "Perfect Storm" at Baylor should not discourage organ donation, transplantation

Transplant News,  August 12, 2004  by Goran B. Klintmalm

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Baylor University Medical Center, one of the nation's most respected transplant programs, experienced the medical equivalent of the perfect storm this summer. That storm, an unprecedented sequence of medical improbabilities, resulted in the tragic deaths of four patients who contracted rabies as a result of transplants from an organ donor, who it was later determined carried the rabies virus. Our thoughts and prayers are with the families of the patients and donor in their time of grief.

Before describing the exceptionally rare chain of events that combined to create this tragedy, it is extremely important those awaiting transplants keep one fact in mind: Baylor follows all regulatory and standard guidelines and then goes beyond those requirements through a stringent focus on quality. All of this is done to minimize the risk of transplantation, and our 20-year-history of more than 1,430 kidney and 2,390 liver transplants has earned us a reputation for quality and safety in patient care. Indeed, the survival rates for Baylor's liver and kidney transplant recipients exceed the national average. Potential donors and their families should be reassured as well. Seventeen people die each day in this country awaiting an organ for transplant, and we must remain committed to reducing that number.

So what happened beginning on May 4? Three patients were transplanted that day with the kidneys and liver from a single 20-year-old male donor. A fourth patient, who received a liver transplant from someone else less than 24 hours later, received part of an artery from the original donor, a fairly common procedure. The three organ recipients died several weeks after their transplants, showing neurological symptoms, including confusion and odd behavior. After numerous tests and studies, it was found they died of rabies. The fourth patient also died of rabies, but had several transplant-related complications that explained the patient's death and masked the symptoms experienced by the previous three recipients.

The donor represents the first improbable element in this so-called perfect storm - a rare coming together of unlikely events. He was, by every required measurement, a medically appropriate organ donor. Although he was later found to be carrying the rabies virus, he died with rabies, not from rabies. His official cause of death was intracranial bleeding, one of the most common causes of death in organ donors. His organs had been tested according to national standards for a broad range of infections, including HIV, Hepatitis B and C, and syphilis. No organs are transplanted until these test results are conducted, which usually takes less than 4 to 6 hours prior to donation, a timeframe short enough to maintain a medically stable donor. For logistical reasons, testing cannot be performed after the donation has been done.

No one in the United States screens potential donor organs for the rabies virus. This is the second highly unusual factor that came into play that day, so it's important to recognize the reasons why rabies is not part of the transplant screening process. One is logistical. Rabies screening takes days, not hours, and organs would not stay viable for transplant if we had to wait that long.

But there are two other critical reasons why there is no rabies screening, and they contributed to the outcome of this rare and unfortunate event. Rabies is a very, very rare disease in humans. Most doctors will never see a case in their lifetime. In fact, only one-to-three people are diagnosed with rabies in the United States each year.

Further, there are only eight cases in medical history of human-to-human transfer of the rabies virus. These occurred in cornea transplants - not solid organs like kidneys or livers - and the only one in the United States was back in 1978. As organ transplantation approaches its 50th anniversary this year, there had never before been a single case of rabies being transmitted through the transplant of a solid organ. In other words, the probability that a donated organ is infected with the rabies virus is so small it's nearly impossible to calculate.

So on May 4, the perfect storm was about to engulf these four patients in critical need of an organ transplant, their families, and the physicians and staff of one of the nation's premiere transplant centers.

As tragic as these events have been, it's my view that further tragedy was avoided precisely because the transplants all took place here at Baylor. If there are heroes in this story, they are the hospital's forensic pathologists. In the best tradition of medical detectives, they sensed an unusual pattern as recipients from the same organ donor each died of a suspicious neurological illness. Our own pathologists contacted state and federal authorities, including the Texas Department of Health and the U.S. Centers for Disease Control and Prevention, whose tests determined the deaths resulted from rabies. But had the transplants been done at three different hospitals, this pattern might never have been spotted.