Man 'locked in' for 23 years

[Sheila]

BRUSSELS, Belgium -- For 23 torturous years, Rom Houben says he lay trapped in his paralyzed body, aware of what was going on around him but unable to tell anyone or even cry out.

The car-crash victim had been diagnosed as being in a vegetative state but appears to have been conscious the whole time. An expert using a specialized type of brain scan that was not available in the 1980s, a PET scan, finally realized it, and unlocked Houben's mind again.

The 46-year-old Houben is now communicating with one finger and a special touchscreen on his wheelchair.

"Powerlessness. Utter powerlessness. At first I was angry, then I learned to live with it," he said, punching the message into the screen during an interview with the Belgian RTBF network, aired yesterday. He has called his rescue his "renaissance."

Over the years, Houben's family refused to accept the word of his doctors, firmly believing their son knew what was happening around him, and gave no thought to letting him die, said his mother, Fina. She was vindicated when the breakthrough came.

"At that moment, you think, 'Oh, my God. See, now you know.' I was always convinced," she said.

The discovery took place three years ago but only recently came to light, after publication of a study on the misdiagnosis of people with consciousness disorders.

While a 23-year error is highly unusual, the wrong diagnosis of patients with consciousness disorders is far too common, according to the study, led by Steven Laureys of Belgium's Coma Science Group.

"Despite the importance of diagnostic accuracy, the rate of misdiagnosis of vegetative state has not substantially changed in the past 15 years," the study said. Back then, studies found that "up to 43% of patients with disorders of consciousness are erroneously assigned a diagnosis of vegetative state."

The issue is fraught with difficult medical and ethical questions. Patients diagnosed as being in a vegetative state with no hope of recovery are sometimes allowed to die.

During Houben's two lost decades, his eyesight was poor, but the experts say he could hear doctors, nurses and visitors to his bedside, and feel the touch of a relative. He says that during that time, he heard his father had died, but he was unable to show any emotion.

Houben's condition has since been diagnosed as a form of "locked-in syndrome," in which people are unable to speak or move but can think and reason.

With so much to say after suffering for so long in silence, Houben has started writing a book.

There is little hope that Houben's physical condition will get better, but his mother said she refuses to give up: "We continue to search and search. For 26 years already."


I think this man must have appreciated that they didn't pull the plug on him because now he can communicate with his family again who made all the difference to him, as well he will help the medical field.

[Jastapilot]