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Trapped in his own body for 23 years – the coma victim who screamed unheard

(The Guardian) – For 23 years Rom Houben was ­imprisoned in his own body. He saw his doctors and nurses as they visited him during their daily 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.

Laureys, a neurologist at the ­University of Liege in Belgium, published a study in BMC Neurology earlier this year saying Houben could be one of many cases of falsely diagnosed comas around the world. He discovered that although Houben was completely paralysed, he was also completely conscious — it was just that he was unable to communicate the fact.

The Belgian former engineering student, who speaks four languages, said he coped with being effectively trapped in his own body by meditating. The moment it was discovered he was not in a vegetative state, said Houben, was like being born again. “I’ll never forget the day that they discovered me,” he said. “It was my second birth”.

Experts say Laureys’ findings are likely to reopen the debate over when the decision should be made to terminate the lives of those in comas who appear to be unconscious but may have almost fully-functioning brains.

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hospital, has advised on several prominent coma cases, such as the American Terri Schiavo, whose life support was withdrawn in 2005 after 15 years in a coma.

Laureys concluded that coma patients are misdiagnosed “on a disturbingly regular basis”. He examined 44 patients believed to be in a vegetative state, and found that 18 of them responded to communication.

“Once someone is labelled as being without consciousness, it is very hard to get rid of that,” he told Der Spiegel.

"But I will not let myself be reduced to silence."

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