BRUSSELS — 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 finally realized it and unlocked Houben’s mind again.
The 46-year-old Houben is now communicating with one finger and a special touch screen 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 Monday.
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 told The Associated Press.
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 percent 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, as was done in 2005 with Terri Schiavo, the severely brain-damaged Florida woman at the center of the biggest right-to-die case in U.S. history. Her feeding tube was removed.
“It makes you think. There is still a lot of work to be done” to better diagnose such disorders, said Caroline Schnakers of the Coma Science Group.
Houben was injured in an auto accident in 1983 when he was 20. Doctors said he fell into a coma at first, then went into a vegetative state.
A coma is a state of unconsciousness in which the eyes are closed and the patient cannot be roused. A vegetative state is a condition in which the eyes are open and can move, and the patient has periods of sleep and periods of wakefulness but remains unconscious and cannot reason or respond.
Houben’s condition has 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 his physical condition will get better, but his mother said she refuses to give up.
