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Coma recovery case attracts doubters

Mon Nov 23, 2009 11:14 AM EST
world-news, health, eu, associated-press, recovery, belgium, coma, rom-houben
Raf Casert, Associated Press
< PreviousNext >
showing 1 of 7 photos
<p>Belgium's Rom Houben uses his touchscreen to communicate during an interview at the service center 't Weyerke in Zolder, Belgium, Tuesday, Nov. 24, 2009.  Houben was misdiagnosed for 23 years as being in a coma until a doctor at Liege University discovered three years ago that Houben's brain was still functioning. Houben was diagnosed as being in a vegetative state following a car crash in 1983. The discovery took place three years ago but only recently came to light, after publication of a study on the misdiagnosis of people with consciousness disorders.(AP Photo/Yves Logghe)</p>

Belgium's Rom Houben uses his touchscreen to communicate during an interview at the service center 't Weyerke in Zolder, Belgium, Tuesday, Nov. 24, 2009. Houben was misdiagnosed for 23 years as being in a coma until a doctor at Liege University discovered three years ago that Houben's brain was still functioning. Houben was diagnosed as being in a vegetative state following a car crash in 1983. The discovery took place three years ago but only recently came to light, after publication of a study on the misdiagnosis of people with consciousness disorders.(AP Photo/Yves Logghe)

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BRUSSELS — Rom Houben's mother remembers her son's amazement when he finally started communicating again after spending 23 years locked in a paralyzed body that was misdiagnosed as vegetative.

"Early on, he was surprised that the words came out of his finger," Fina Nicolaes said. "Now, he is busy writing a book."

However, his communication, with the help of a speech therapist holding his hand punching a touch screen, is stirring controversy only days after the story of his comeback as a fully conscious man entombed in an immobile body captured the world's imagination.

It has scholars questioning the technique of facilitated communication, bloggers denouncing it as a cruel farce, and millions asking as they watch the video of Houben's hand being held as it quickly types into the screen — who is really doing the punching here?

Dr. Steven Laureys understands the questions and said he might ask the same if he did not know the patient. And he said there is only one way to address the doubters — science.

"For me, there are two questions: Is he conscious? Can he communicate? That is 'yes' twice," he said in a telephone interview with The Associated Press.

Doctors point out that it has been three years since Houben was discovered to be conscious and he has had much time to improve his communication skills. In the early stages they were basic and through practice he has been able to communicate as fluidly as he does now, they say.

One of the checks Laureys applied to verify Houben was really communicating was to send the speech therapist away before showing his patient different objects. When the aide came back and Houben was asked to say what he saw, that same hand held by the aide punched in the right information, he said.

He said there are many more tests he and his team conducted that he won't divulge because they are covered by medical secrecy and patients rights. "How would you like me discussing your IQ on the Internet?" he asked.

Laureys of the University of Liege has plenty of credentials.

He has published papers on patients in comatose or vegetative states, including one in the prestigious medical journal, The Lancet Neurology, with colleagues from Cornell University and Cambridge University. Dr. James Bernat of Dartmouth Medical School calls him "one of the world's leaders" in the field of brain imaging in people with consciousness disorders.

Still, when news of Houben's recovery and the video hit the world this week, some people immediately began raising doubts.

Bioethics professor Arthur Caplan of the University of Pennsylvania was among the first — calling the practice of facilitated communication "Ouija board stuff."

"When people look at it, it's usually the person doing the pointing who's doing the messages, not the person they claim they are helping."

The British Psychological Society, through clinical neurologist Dr. Graham Powell echoed that view, arguing there is nothing in scientific literature to support using facilitated communication as it's been used with Houben.

"The person (doing the facilitated communication) says they're being guided by the patient, but we really don't know if that's the case," Powell said.

Powell said a much more simple yes-no button device would reduce the potential of error: "He may not use it perfectly and his movement control may not be great, but with a system like this, there is no danger of a third party introducing mistakes."

The 't Weyerke care institute in eastern Belgium where Houben is residing knows the practice "is open to controversy. We realize that," said spokesman Lode Vanbriel.

He said Houben started out with a yes-no system before moving to the touch screen, and returning to it would be extremely limiting. He added it would be strange for Houben's mother not to have noticed anything wrong over the three years he has been communicating again.

Nicolaes said she is convinced her son speaks to her and appreciates the jokes and "black humor" that lace his sentences.

Laureys's team is in the process of producing a scientific study validating the controversial practice. He refused to discuss it in the media, saying he will follow the classical route of scientific peer reviews and publication in specialized journals before making it public to the world at large.

He hopes it will be ready "in the not too distant future."

The next challenge for Houben is to continue improving his movement by tiny steps so that one day, he might even write without an aide, said Laureys.

"We talk about small movements, a tiny control of the finger. But it can mean a lot for him. He might control his wheelchair or his computer," he said.

___

AP Medical Writers Malcolm Ritter in New York and Maria Cheng in London contributed to this article.

© 2009 The Associated Press. All rights reserved. This material may not be published, broadcast, rewritten or redistributed.
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  • Public Discussion (9)
Jim420

It's amazing the leaps science is making, with "connecting" to the human brain, allowing quadraplalegics to communicate.

  • 2 votes
Reply#1 - Mon Nov 23, 2009 11:20 AM EST
BelindaK

Wow. How amazing is that? That poor guy was conscience all those years and couldn't communicate. Poor thing. I can't even imagine. What must he have been thinking?

  • 4 votes
Reply#2 - Mon Nov 23, 2009 12:36 PM EST
jameseg

I agree, BelindaK! It must have been terrible for him!

I hope this case leads to improvements in the diagnosis and treatment of patients, including better communication techniques with disabled patients.

Below is a link to another article about this case.

http://www.dailymail.co.uk/news/worldnews/article-1230092/Rom-Houben-Patient-trapped-23-year-coma-conscious-along.html

  • 2 votes
#2.1 - Mon Nov 23, 2009 12:42 PM EST
Reply
take2la

Imagine all the surgery induced loss of consciousness, dental induced, medicated (un)conscious events which we all HAVE experienced, responded to, remembered & forgotten during our travels.

  • 1 vote
Reply#3 - Mon Nov 23, 2009 12:49 PM EST
maw

That's the kind of situation I have nightmares about.. how awful!

  • 1 vote
Reply#4 - Mon Nov 23, 2009 2:15 PM EST
BelindaK

God bless this guy. Look at him, after all he's been through, enjoying his life now. He's reading and getting on the computer. They say your life is what you make of it and this is probably a good example of that. He could probably teach us all a lesson or two. His parents must be in heaven to see him communicating again.

  • 1 vote
Reply#5 - Mon Nov 23, 2009 2:44 PM EST
MinnieApolis

Granted, in 1983, when the man's accident happened, there was much less known about the brain or comas. Just think, a hundred years ago, he probably would have been buried in a coffin and six feet under with no one the wiser that he was really alive. That's why there was a whole slew of devices for someone to alert those above ground from inside specially-outfitted coffins in that era. Think about that, this guy could have been far, far worse off than just kept in a hospital bed for 23 years. At least now we can communicate with him and start to bring him back to the living.

  • 3 votes
Reply#6 - Mon Nov 23, 2009 2:50 PM EST
aoimiyazaki

Wow. This guy is a miracle. Welcome back, Houben.

    Reply#7 - Tue Nov 24, 2009 8:04 AM EST
    AWS-1489395

    I’m starting to live his mom’s nightmare:

    My wife is suffering from an automobile accident where my wife is listed as in a vegetative state, and my health insurance will not authorize my wife to get any rehabilitation serves.

    My wife now lays in a foreign bed with her body practically lifeless with the only signs of life come from her eyes that are stuck in a body force to slowly die from a government medical plan refusing her healing treatment.

    There is a facility in the city we are in with properly trained personnel and equipment that can attend to the needed rehabilitation of my struggling wife. TriCare/TriWest government provide health insurance will not authorizer her to go there. They want to warehouse her in a nursing home where they can reclassify her as a maintenance patience witch they do not cover, so they can stop paying for her medical needs. I do not have enough money to pay for her to go there, and it is hard to know there is a place she can go to get better put there is nothing I can do to get her there.

    I have sat by her bed side holding her hand for the last sixteen months now watching her go into one respiratory distress after and other due to the lack of physical therapy that she could benefit from to make her stronger, but instead she is getting weaker and weaker. She has spent the last 16 weeks at a hospital in and out of their ICU twice and back into a general room, to stabilize her for infections in her body. That gets extremely more difficult to cure each consecutive time she gets internal infections. She is too young to die, especially when it does not have to happen.

    yoreye@hotmail.com

    • 1 vote
    Reply#8 - Wed Nov 25, 2009 12:02 AM EST
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