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Conscious but paralysed; Belgian patient’s case not unique

Published on 25/11/2009

Brussels — The story of a Belgian patient wrongly diagnosed as comatose for 23 years revives the debate on care for those considered in a vegetative state, with the astonishing case far from unique according to a recent study.

Rom Houben, the victim of a road accident in 1983, was believed to be in a vegetative state but was in fact paralysed and unable to communicate.

Houben’s true condition was discovered three years ago when new tests at the University of Liege, led by Professor Steven Laureys, found that his brain was still functioning.

The 46-year-old Houben, whose case has made global headlines in recent days, had been conscious for years but unable to communicate or even make known to his care-givers and family that he was conscious.

The state, which has various levels, is known as "locked-in syndrome" and a recent study carried out in Belgium discovered that doctors get their coma diagnosis wrong "in numerous cases."

The research, by Laureys and others, found that in too many cases poor coma diagnoses were given — more than 40 percent in certain categories of sufferers.

Former engineering student and martial arts enthusiast Houben told the German weekly Der Spiegel that he had meditated to pass the long years trapped in his own body.

Using a specially-adapted computer to type messages, Houben has been able to describe the ordeal he endured.

"I would scream, but no sound would come out," he said, "I will never forget the day they finally discovered what was wrong — it was my second birth."

He could hear what was being said around him throughout, but was unable to respond.

"I became the witness to my own suffering as doctors and nurses tried to speak to me and eventually gave up," he said.

The notion of the "minimally conscious state," different from coma, was not known to medicine until 2002, according to the Liege University researchers.

The study revealed that of 44 patients diagnosed by normal methods as being in a vegetative state, 18 were in some way conscious and four of them eventually emerged from their ‘coma’.

Correct diagnosis, often achieved through monitoring brain movement, would find patients responding to pain or speech. "You can’t talk about ‘vegetables’, they understand," said neuropsychologist Audrey Vanhaudenhuyse, part of the Liege research team.

The creation of new tests benefited Houben in 2006 and in general is helping to minimise diagnostic errors.

However, the relevant monitoring techniques such as magnetic resonance imaging (MRI) remain expensive and are not available in all hospitals.

Patients from Belgium and elsewhere in Europe have for years been treated at Liege University, which has state-of-the-art equipment.

"The aim is to have an overall view of the functioning of the brain, to determine which areas have been preserved and to decide whether the patient has a good chance of recuperation or not," Vanhaudenhuyse explained.

"We measure the degree of auditive perception, making them listen to a neutral sound, like a ‘beep’ then saying their name. If the brain reacts differently then there is a level of consciousness there," she added.

The Liege study also concludes that, despite medical progress, misdiagnosis has not significantly diminished in recent years, due to the lack of common testing procedures.

"Every patient should be tested at least 10 times before they are categorically defined as ‘vegetative’," according to Laureys, so as to avoid any more cases like Houben’s.