There was so much hope for Buffalo firefighter Donald J. Herbert last spring, after his dramatic emergence from his minimally conscious state.
In recent months, though, Herbert never approached that level of talking and joking with his loved ones. He died early Tuesday in Mercy Hospital, 2 1/2 days after he was admitted with pneumonia.
National and local experts on severe brain injuries say Herbert belonged to what one doctor referred to as a "phenomenally rare subset" -- a group of between five and 10 people across America who have made similar progress after being minimally conscious.
But Herbert's lack of continued progress -- and even his death at age 44 -- seem typical of that group, experts say.
"The overall prognosis [for those patients] is not good," said Dr. Ronald E. Cranford, a University of Minnesota neurologist and an expert on the minimally conscious state.
"Some of them have lapsed back. They usually don't regain motor functions. And they often die within a few years, because of complications that arise from being unconscious and then severely immobilized."
Cranford then addressed the heartache that follows those raised expectations.
"It's unfortunate, because the family sees so much hope," he said. "But in most of the cases, they don't pan out in the long run."
Herbert's family, though, sounded thankful Tuesday about his remarkable emergence last spring.
Unusual circumstances in Herbert's case -- including a fall from a nursing home bed -- make it even tougher to generalize about what his case means in the larger context of severe brain injuries.
After suffering a severe head injury when a roof collapsed on him as he fought a December 1995 fire, Herbert emerged from a coma but remained in a minimally conscious state for nearly 10 years, unable to carry on any meaningful conversation.
Last April 30, he looked out the window in the hallway of his Orchard Park nursing home and asked where his wife, Linda, was. That led to an approximately 16-hour lucid period when he remained awake and talked with his family and close friends.
Herbert suffered a setback last May, when he hurt his head in a fall at the nursing home.
He was stitched up in Erie County Medical Center and flown in early June, as planned, to the Rehabilitation Institute of Chicago, said Dr. Jamil Ahmed, the physician who prescribed the "drug cocktail" that helped bring Herbert into a more cognitive state.
However, doctors in Chicago found bleeding in Herbert's brain resulting from the fall, bleeding that was likely worsened by the air pressure from the flight, Ahmed said.
Physicians stopped the drug cocktail and focused on the bleeding. But after the bleeding subsided, Herbert failed to show much improvement from rehabilitation, and the institute suggested that he return to Buffalo in November, Ahmed said.
"He regressed and never really improved much after the fall," Ahmed said.
Ahmed said that he restarted the drug cocktail in a low dose in December and that Herbert appeared to make modest improvements.
"He could follow commands and move his hand. He talked a little. He could eat soft foods. But he was very lethargic and tired," Ahmed said.
Another MRI about 10 days ago showed that Herbert was in danger again from bleeding in the brain, and plans were made for a neurosurgeon to see him, Ahmed said. But in the days before his death, the doctor said, Herbert was bedridden and using a feeding tube, increasing the risk of such potentially fatal infections as pneumonia.
"Mr. Herbert gives me hope that medications could help many patients like him," Ahmed said. "But his case also shows me that we have to be more careful watching these patients and not let them get hurt."
Other experts also see the Herbert case as a breakthrough that gives hope in cases that might be considered hopeless.
"There probably are patients out there, that with enough understanding and study, might be awakened from their comatose state," said Dr. Michael A. Meyer, a University at Buffalo professor of clinical neurology at Jacobs Neurological Institute.
Meyer, who also teaches nuclear medicine, suggested doing more research and studying of these patients. "The science of understanding what happens to people in comas and minimally conscious states is really lacking," he said. "We're way behind where we should be in understanding traumatic brain injury."
Although rare, there have been other examples of brain-damaged patients who show sudden improvement years after injury. Experts say that it is unclear why this happens, what treatments work best and whether a recovery can be maintained.
"What you see are idiosyncratic responses to certain drugs," said Dr. John M. Whyte, director of the Moss Rehabilitation Research Institute in Philadelphia. "There is no proven treatment, and no logic to the treatments. It's done on a trial-and-error basis."
Janet I. Facklam, a rehabilitation counselor specializing in brain injury and a Hilbert College assistant professor, believes that there is a lesson for the public in the Herbert case.
"His case really tells us what those of us in the field know: Don't depend on anything going by a textbook," she said. "You never can say that because A happens, B will happen.
"Especially with the brain, it's such an individual experience."
Calling hours for Herbert will be from 2 to 9 p.m. Thursday and Friday in the Joseph K. Quinn Funeral Home, 192 Abbott Road. A Mass of Christian Burial will be offered at 10:30 a.m. Saturday in Our Lady of Victory Basilica in Lackawanna.
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