For 23 years Rom Houben was imprisoned in his own body. He saw his doctors and nurses as they visited him daily during their rounds; he listened to the conversations of his carers; he heard his mother deliver the news to him that his father had died. But he could do nothing. He was unable to communicate with his doctors or family. He could not move his head or weep, he could only listen.
Doctors presumed he was in a vegetative state following a near-fatal car crash in 1983. They believed he could feel nothing and hear nothing. For 23 years.
Then a neurologist, Steven Laureys, who decided to take a radical look at the state of diagnosed coma patients, released him from his torture. Using a state-of-the-art scanning system, Laureys found to his amazement that his brain was functioning almost normally.
“I had dreamed myself away,” said Houben, now 46, whose real “state” was discovered three years ago and has just been made public by the doctor who rescued him, according to a report in German magazine Der Spiegel this week.
Laureys, a neurologist at the University of Liege in Belgium, has published a scientific paper saying that Houben could be one of many cases of falsely diagnosed comas around the world. He discovered that although Houben was completely paralyzed, he was also completely conscious — just unable to communicate the fact.
Houben now communicates with the help of a computer with a special keyboard that he activates with his right hand — movement developed with the help of intense physiotherapy over the last three years.
He realized when he came round after his accident — which had caused his heart to stop and his brain to be starved of oxygen for several minutes — that his body was paralyzed. Although he could hear every word his doctors spoke, he could not communicate with them.
“I screamed, but there was nothing to hear,” he said, via his keyboard.
The Belgian former engineering student, who speaks four languages, said he coped with being effectively trapped in his body by meditating. He told doctors he had “traveled with my thoughts into the past, or into another existence altogether.” Sometimes, he said, “I was only my consciousness and nothing else.”
Care personnel and doctors at the hospital in Zolder in Belgium eventually gave up hope that he would ever come round.
The moment it was discovered he was not in a vegetative state, said Houben, was like being born again.
Belgian doctors used an internationally-accepted scale to monitor Houben’s state over the years. Known as the Glasgow Coma Scale, it requires assessment of the eyes, verbal and motor responses. But they failed to assess him correctly and missed signs that his brain was still functioning.
Laureys, who is head of the Coma Science Group and department of neurology at Liege University hospital, has advised on several prominent coma cases, such as the US patient Terri Schiavo, whose life support was withdrawn in 2005 after 15 years in a coma.
Laureys concluded in his study that coma patients are diagnosed falsely “on a disturbingly regular basis.”
In about 40 percent of cases diagnosed as vegetative, more careful examination shows that there is still some level of consciousness.
He examined 44 patients believed to be in a vegetative state, and found that 18 of them responded to communication. Houben was the most startling example.
“Once someone is labeled as being without consciousness, it is very hard to get rid of that,” he told Der Spiegel, calling for an overhaul of the methods of diagnosis.
He said patients suspected of being in a non-reversible coma should be “tested 10 times” and that comas, like sleep, have different stages and need to be monitored.
Laureys said that patients who are not fully unconscious can often be treated and are capable of making progress.
About one-fifth of patients who suffer serious head and brain injuries spend more than three weeks in a coma. Of those, between 15 percent and 25 percent are technically still alive, but remain in a state of unconsciousness and never wake up.
Houben hopes to write a book detailing his trauma and his “rebirth.”
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