Today's News & Views
November 23, 2009

Man Misdiagnosed as Being in a "Persistent Vegetative State" for 23 Years
Part Two of Three

By Dave Andrusko

Earlier this morning I read about Rom Houben, misdiagnosed as being in a so-called "persistent vegetative state" for 23 years. Doctors discovered three years ago Houben, who was severely injured in a car crash in 1983, had been mentally alert all along, but unable to communicate. Only today did the news reach a wider audience.

But I was unable to post a TN&V until later because of a number of other things I had to get done. This is fortunate, because as the day progressed many very important details and clarifications came out.

Rom Houben

A lot of distinctions had been blurred in the accounts. For example, four very different conditions--coma, comatose, vegetative state, and persistent vegetative state--were used almost interchangeably. Even after reading a number of stories, it's difficult to know who thought what when. One of the later stories suggested doctors first thought Houben was in a coma and then lapsed into a "persistent vegetative state."

But whatever the diagnosis, it was wrong. Fortunately for Houben, a former martial arts enthusiast and engineering student, he was not starved to death.

"Mr Houben recalled the terrifying realisation after he came round from his accident when he knew that he had lost complete control of his body – but no one knew that he was fully conscious," The Times of London reported. Although he could hear every word his doctors were saying, Houben could not communicate with them. "I screamed, but there was nothing to hear," he told the German magazine Der Spiegel.

Initially, all the credit for the correct diagnosis seemed to belong to the medical team headed by Dr. Steven Laureys, a neurological researcher at the Liege University Hospital in Belgium, a man who clearly is on a mission. While they deserve plenty of kudos, there is a "rest of the story," as we shall see momentarily.

Dr. Steven Laureys

"Laureys, who is head of the coma science group and neurology department at Liège University hospital, concluded coma patients are diagnosed falsely 'on a disturbingly regular basis," The Guardian reported. "In around 40% of cases diagnosed as vegetative, more careful examination shows 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. 'Once someone is labelled as being without consciousness, it is very hard to get rid of that,' he told Spiegel magazine, calling for a systematic overhaul of the methods of diagnosis."

He told the Guardian that "patients who are not fully unconscious can often be treated and are capable of making considerable progress." Houben now communicates through a computer, and a special device above his bed makes it possible for him to read books

But how did Dr. Laurey even learn about Houben? His parents, who did not believe he was comatose or vegetative, according to the Associated Press. His mother, Fina Houben, talked with the AP by phone and said they had taken Rom to the United States five times for tests.

"More searching finally got her in touch with Laureys, who put Houben through a PET scan that indicated he was conscious," reports Raf Casert of the AP. "The family and doctors then began trying to establish communication. A breakthrough came when he was able to indicate yes or no by slightly moving his foot to push a computer device placed there by Laureys' team. Then came the spelling of words using his finger and a touch-screen attached to his wheelchair." It is not entirely clear why the case came to light at this particular moment; Laureys published his study in the journal BMC earlier this year, showing that some 40% of patients diagnosed as being in a vegetative state were not.

Be that as it may, Houben is a very happy man. "I'll never forget the day that they discovered me, it was my second birth," he said. Now he says, "'I want to read, talk with my friends via the computer and enjoy my life now that people know I am not dead," according to the Daily Mail.

http://www.nrlc.org/News_and_Views/Nov09/nv112309part2.html