Rom Houben, 23 years in a ‘coma’

23 years trapped inside what others think is a coma while your brain is working close to normal, but you can’t get people to notice.  Big news?  It most certainly is!

Rom Houben is the person trapped in this way.  Headlines, headlines, headlines!  All about 23 years trapped.  Is this the headline?

His case was diagnosed correctly in 2006, ending the 23 year wait from a car crash in 1983.   Not November 2009 but 2006.  Why did the media flurry blow up on 23 Nov 2009 with around 500 news articles worldwide?

Houben’s case was reported in the journal BMC Neurology in July 2009, though he was not named in it.  The report investigated misdiagnosis of vegetative states.  Previous studies had found up to 43% of patients were misdiagnosed when ‘clinical consensus’ was used. 

The July 2009 study found that this rate of misdiagnosis had not changed in the last 15 years, and showed that a different approach, the JFK Coma Recovery Scale – Revised (CRS – R) was more accurate.

The July 2009 study was reported by a group of people including Professor Steven Laureys, a specialist in this area.  According to the New York Daily News, Laureys put Houben through a PET scan, to discover that although paralysed, Houben’s brain activity was close to normal. 

From there, Houben communicated first by pushing with his foot to indicate a simple yes or no.

The story seems to have taken off after Der Spiegel published an interview with Houben over the weekend, with the rest of the world picking on the 23 years angle.  In reality, the use of outdated diagnostics when a better method is available means the 40% error rate continues.

By pure coincidence, a BBC Horizon programme in Oct 2009, The Secret You, had a slot featuring Dr Adrian Owen of the Medical Research Council, who is working in the same area i.e. using brain scans in patients who appear to be in a vegetative state to see if their brain is still responding.

The question that intrigued us with Houben was still why?  PET scans weren’t new in 2006.  Referring again to the New York Daily News, the answer appears to be Houben’s mother, Fina Houben.

She had refused to accept that her son was comatose or vegetative, and had taken him 5 times to the US for tests.  After this she searched for another expert, found Steven Laureys, Rom Houben became part of the study, and a PET scan followed.

So Team McCallum congratulates Fina Houben for continuing to believe.

Click here for Feb 2010 update on this story.