Comatose for 23 years, Belgian feels reborn

November 24, 2009 By RAF CASERT , Associated Press Writer
Belgium's Rom Houben uses his touchscreen and assistance of his speech therapist Linda Wouters, left, 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)

(AP) -- Helped by a therapist, Rom Houben's outstretched finger tapped with surprising speed on a computer touchscreen, spelling out how he felt "alone, lonely, frustrated" in the 23 years he was trapped inside a paralyzed body.

After a doctor found he was wrongly diagnosed as being in a vegetative state, and worked out a way for him to communicate, Houben said he now feels reborn.

"And just like with a baby, it happens with a lot of stumbling," the 46-year-old Belgian wrote, tapping out the words in Dutch for Associated Press Television News on Tuesday as an aide guided his hand.

A leading bioethicist, however, expressed skepticism that Houben was really communicating, saying the responses seem unnatural for someone with such a profound injury and an inability to communicate for decades.

Injured in a car crash in 1983 when he was 20, Houbon was diagnosed as being in a vegetative state, though doctors now believe he was conscious the whole time.

An expert using a specialized type of brain scan that was not available in the 1980s says he finally realized Houben was suffering from a form of "locked-in syndrome," in which people are unable to speak or move but can think and reason, and provided him with the equipment to communicate.

Now, assisted by a speech therapist who moved his finger letter-by-letter along a touch-screen keyboard, Houben says years of being unable to move or express himself left him feeling "alone, lonely, frustrated, but also blessed with my family."

"It was especially frustrating when my family needed me," wrote Houben, who says he heard his father died during that time, but was unable to show any emotion. "I could not share in their sorrow. We could not give each other support."

"Just imagine. You hear, see, feel and think but no one can see that. You undergo things. You cannot participate in life," he wrote.

The therapist, Linda Wouters, told APTN that she can feel Houben guiding her hand with gentle pressure from his fingers, and that she feels him objecting when she moves his hand toward an incorrect letter.

Despite the occasional typo, the responses seemed fluid and conversational Tuesday. Suffering from a cold, he opened the interview by typing out, with the help of his therapist: "You catch me at a bad moment, I have looked better."

Dr. Steven Laureys of Belgium's Coma Science Group, whose testing uncovered Houben's misdiagnosis three years ago, says he has discovered some degree of consciousness using state-of-the-art equipment like PET scans on other patients and looks at about 50 cases from around the world a year.

But none are as extreme as that of Houben, who was fully conscious inside a paralyzed body. Many center on the fine distinction between a vegetative state and minimal consciousness.

Arthur Caplan, a bioethics professor at the University of Pennsylvania who has had no direct contact with Houben or personal knowledge of the case, said he is skeptical of Houben's ability to communicate after seeing video of his hand being moved along the keyboard.

"That's called 'facilitated communication,'" Caplan said. "That is Ouija board stuff. It's been discredited time and time again. 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."

Houben's mother, Fina, told the AP her son has been communicating for three years and she believes no one is guiding him.

"At first he had to push with his foot on a sort of computer mouse which only had a yes-no side," she said in a telephone interview. "Slowly he got better and developed through a language computer and now communicates with this speech therapist holding his hand."

Dr. James Bernat of Dartmouth Medical School said he could not comment on the facts of Houben's case specifically. However, he called Laureys "a very rigorous scientist and physician ... one of the world's leaders" in the field of brain imaging in people with consciousness disorders.

Houben's mother said her son has become so proficient at punching sentences that he has even started writing a book. He has also written an article titled "Hidden wealth ... the force of silence" for the in-house magazine at the 't Weyerke institute in eastern Belgian where he is being treated.

Asked Tuesday how he felt when his consciousness was discovered, Houben tapped out rapidly with the help of his aide: "I especially felt relief. to show that I was indeed there."

Laureys said he is now re-examining dozens of other cases. In a recent study, 40 percent of the patients diagnosed as being in a vegetative state were in fact minimally conscious.

American experts acknowledged a vegetative state diagnosis can often be wrong. But in most cases, they said, it involves a patient who is minimally conscious, whose muted and intermittent signs of awareness might be overlooked, rather than a patient like Houben, who is fully conscious but paralyzed.

Experts blamed the difficulty of diagnosis, insufficient training of doctors and a lack of follow-up to look for subtle signs that a once-vegetative patient has actually improved.

"Many people recover over time," said Dr. Joseph J. Fins of the Weill Cornell Medical College. "It's very easy for the label that is affixed at one point to sort of become eternalized, and so no one questions the diagnosis."

©2009 The Associated Press. All rights reserved. This material may not be published, broadcast, rewritten or redistributed.

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1 / 5 (1) Nov 24, 2009
I've often wondered what it would feel like to have everyone believe that you're in a coma. I've never thought that doctors study the "coma" patient thoroughly.

Initiating communication takes a lot of effort and creativity, from both parties. And time, which doctors don't have today.

One obvious way would be to hook the patient up to a polygraph, and then say that you don't think he should be kept alive. Any non-comatose patient would show changes in blood pressure, skin humidity, even body temperature, after hearing such news. (Of course I don't suggest this, but this shows that it *is* doable.)
not rated yet Nov 24, 2009
Having experienced something similar to this while in the hospital following spinal/brain stem surgery, I believe this story. It was the scariest moment in my life to be totally aware and cognizant of what was going on, but unable to communicate due to total paralysis, I could not so much as blink or twitch my eye! Mine was due to a bad mixture of medications, and the two episodes were short lived. (The nurse didn't believe me the first time). The second time the nurse was in the room when it happened. All my thoughts go to this man and his family. I believe them.
4 / 5 (1) Nov 25, 2009
The fact that his foot moved after a question should have been a give away.
The main take away is that there was a failure in the continuity of care. The medics did not perform effective re-assessments of the patients condition in the 23 years. The system needs to be improved.
Humans are not static objects, they change over time. I recall there was a case of a guy whose brain grew some new neurons and it fixed his paralysis. Aparently it was 1 in million chance.
Medical care is very inconsistant. You have to seek second opinions. I have seen docs diagnose patients based on heresay/assumptions and not bothering to examine the patient. This I fear is common place.

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