Mom: Son Conscious During 23-Year Coma

(AP)  A man who emerged from what doctors thought was a vegetative state says he was fully conscious for 23 years but could not respond because he was paralyzed, his mother said Monday.

Rom Houben, 46, had a car crash in 1983 and doctors thought he had sunk into a coma. His family continued to believe their son was conscious and sought further medical advice.

Professor Steven Laureys of Belgium's Coma Science Group realized that the diagnosis was wrong and taught Houben how to communicate through a special keyboard, said Dr. Audrey Vanhaudenhuyse, who is on Laureys' team.

Rom used the device to tell a reporter for the German magazine Der Spiegel that: "I screamed but there was nothing to hear."

Belgian doctors who treated him early on said that Rom had gone from a coma into a vegetative condition.

Coma is a state of unconsciousness in which the eyes are closed and the patient can't be roused, as if simply asleep. A vegetative state is a condition in which the eyes are open and can move, and the patient has periods of sleep and periods of wakefulness, but remains unconscious and unaware of him or herself or others. The patient can't think, reason, respond, do anything on purpose, chew or swallow.

But Rom's parents would not accept that he was comatose or vegetative.

His mother, Fina Houben, said in a telephone interview that they took him five times to the United States for tests.

More searching finally got her in touch with Laureys, who put Houben through a PET scan that indicated he was conscious. 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.

"You have to imagine yourself lying in bed wanting to speak and move but unable to do so — while in your head you are OK," Vanhaudenhuyse said. "It was extremely difficult for him and he showed a lot of anger, which is normal since he was very frustrated," she said.

The case came to light after Laureys published a study in the journal BMC Neurology this year showing that about four out of ten patients with consciousness disorders are wrongly diagnosed as being a vegetative state. Houben, although not specifically mentioned, was part of the study.

Houben has started writing a book on his experiences.

[lloydbest1]

To the skeptics:

It is still possible (even likely) that he is in a persistant vegetative state and any "communication" on his part is fleeting or non existant....But

There is a condition that some unfortunate folks suffer as a consequence of severe spinal cord injury called "Locked-in Syndrome". These patients are fully conscious but can not move, breathe or speak on their own. They are COMPLETELY paralysed. Most quadreplegics have the use of their facial muscles and some have limited use of their arms and hands. Christopher Reeve was a good example of a quadreplegic with some voluntary muscle control. Locked in patients have none. At best they may be able to blink an eye or raise an eyebrow, but that's the extent of their abilities.

Rom Houben may actually be fully conscious and aware but suffering from such a locked in state that he is so completely disabled that he appears to be comatose.

My interest in this tragic case stems from a recent accident a friend of mine suffered where he busted three of the seven veterbrae in his neck including C2. So far he has some voluntary facial muscle movement but can do little else. It is still early days so he may be able to regain more functionality, perhaps even walk out of the hospital on his own.

In any case I can not imagine a fate worse than being completely functional mentally - and Rom may very well be - but helpless and unable to move even in the slightest.

[endurorob_5]

I know of the locked in syndrome but my skepticism is a result of watching the video of his assistant typing for him. His eye are shut so even if he were aware he would not be able to see the keyboard. My biggest question is how does the assistant determine where he wants to have his hand moved and how could that interaction between them be so swift. From what I see she is just moving his hand and typing where she wants. There is no inidication that he is aware.

[endurorob_5]

O.K. I watched the video of this. He was just lying with his eyes closed and his "assistant" was typing away with his finger. How is this interpreted as him communicating. Don't want to be the big pesimist but this looks like B.S. to me.

[RedWings_ninety_one]

I can't imagine being that helpless, to be concious and not able to move. Not to mention when you were able to finally get around, there's all kinds of new technology and things that you have to get used to like a newborn baby.

[fear-teagaisg]

An alarming video from ITN in Britain and posted on CNN seems to show that the communications attributed to Mr. Hoeben, the man in the coma, are due to the discredited method "facilitated communication" and are not his own. It seems clear that the assistant is using Mr. Hoeben's hand as a pointer and typing for him.

http://us.cnn.com/video/?/video/health/2009/11/24/moore.uk.23.year.coma.patient.itn

Even if unexpected levels of brain activity were found in Mr. Hoeben, it does not follow that the communications attributed to him when people are holding his hand are really his. He could be even be thinking something different than what he is being made to say. What is really needed are double-blind authorship tests.

As for FC, it remains without any scientific foundation whatsoever. Despite the protestations of FC advocates to the contrary, after almost 30 years there remains not a single properly controlled scientific study showing reliable facilitated communication from even one individual. Instead, the facilitator is reliably found to be author. FC has been repudiated by the American Psychological Association, American Academy of Pediatrics, the American Academy of Child and Adolescent Psychiatry, and several other major organizations. The studies done by FC advocates allegedly in their favor are astonishing in their lack of methodological rigor. Most are anecdotes, and among other problems, not one includes a double-blind test for facilitator authorship of the output.

This appears to be another case in which a person, who might be capable of genuine communication--if the brain scan evidence is meaningful--has been hijacked to type the thoughts of other people. Better methods are available to assist the communication of people who cannot move.

[endurorob_5]

I am a bit skeptical here. I have yet to see any videos of this but the explanation I have heard on how he communicates is that someone else moves his hand on the key board for him. If his hand is being manipulated by soemone else how can we say it is he who is communicating. Honestly, I could manipulate my dogs paw on a key board to type words.

[jinks_smith]

God Is Good!!! He always makes a way when theres seems to be no way...

[CreAtivSpelErr]

The method of communication being used here is not via "computer" but facilitated communication (FC) in which a facilitator helps guide Rom's hand to touch a screen. Unfortunately, facilitated communication is a hoax.

There is on one inescapable fact - FC cannot pass a double blind test.

Step 1) Show Rom a photo of a bicycle and show his facilitator a photo of a fish (with a divider so that neither can see the other person's picture).

Step 2) As Rom to type what he sees.

Step 3) Watch Rom type the word Fish even though he has no way of knowing what his facilitator is seeing.

Step 4) Repeat the process 100 times and find that in EVERY case the word type is of the photo the facilitator sees.

The facilitators are sub consciously guiding Roms hand, just like using a ouiji board. It is difficult to believe they could do this without being aware of it, but it's true. Look up "Prisoners of Silence" from 60 Minutes.

[sluffluddley]

Same situation as described in "Johnny Got His Gun", WWI anti-war novel. Sad ending.

[rwsmith29456]

Well, looks like the parents were right in this case and thank goodness for a doctor willing to test him. Seems to me that PET scans should be de rigor for comatose/vegatative patients if it can make a difference in the diagnoses.

[erasmus111]

by PVperson2 November 23, 2009 8:25 PM EST
To elaborate, I had open heart surgery last Feb., they give you a paralyzing drug along with the anesthesia, I "woke" from the anesthesia at 2 in the morning, but laid there unable to move or speak or anything for 4 1/2 hours, I went a little crazy in that short a time, 23 years, give me death.


Be very thankful that you didn't wake up during the surgery. It happens all too often.