Belgian man: end of coma misdiagnosis like rebirth

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)

BRUSSELS - With a caretaker holding his hand, a Belgian man who was diagnosed as comatose for 23 years typed out a message Tuesday that he felt reborn after decades of loneliness and frustration.

A leading bioethicist, however, expressed skepticism that the man was truly communicating on his own.

Car-crash victim Rom Houben was diagnosed as being in a vegetative state but appears to have been conscious the whole time, doctors here said. An expert using a specialized type of brain scan that was not available in the 1980s says he finally realized Houben was conscious and provided him with the equipment to communicate.

Assisted by a speech therapist who rapidly moved his finger letter by letter along a touch-screen keyboard, Houben told AP Television News that years of being unable to move or communicate left him feeling “alone, lonely, frustrated, but also blessed with my family.”

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.

“It was especially frustrating when my family needed me. I could not share in their sorrow. We could not give each other support,” Houben wrote during the interview at the ‘t Weyerke institute in eastern Belgium.

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

Arthur Caplan, a bioethics professor at the University of Pennsylvania, 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.”

Caplan also said the statements Houben allegedly made with the computer seem unnatural for someone with such a profound injury and an inability to communicate for decades.

Asked how he felt when his consciousness was discovered, Houben responded through the aide that: “I especially felt relief. Finally be able to show that I was indeed there.”

“Just like with a baby, it happens with a lot of stumbling,” he wrote.

The doctor who discovered that Houben had been wrongly diagnosed said that he is re-examining dozens of other cases.

Dr. Steven Laureys said he has discovered some degree of consciousness using state-of-the-art equipment in other patients but won’t say how many. He looks at about 50 cases from around the world a year but none are as extreme as that of Rom Houben, who was fully conscious inside a paralyzed body. Many center on the fine distinction between a vegetative state and minimal consciousness.

He said Tuesday that: “It is very difficult to tell the difference.”

His studies showed that some 40 percent of patients with consciousness disorders are wrongly given a diagnosis of a vegetative state.

“It is clearly unacceptable. It is four times out of ten that they think the patient is in a vegetative state but in reality he is minimally conscious,” Laureys said.

Patients from Europe and around the world brought to his center in Liege for a second opinion go through and PET scans, MRI’s and a battery of other tests during a weeklong reassessment.

“Sometimes patients fly in and there is all this hope. But after the tests we have to confirm they are the opposite case from Rom and that there is no error,” Laureys said. “But that too helps the family accept reality.”

In Belgium alone there are some 350 patients diagnosed as in a vegetative state, he said.

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Associated Press Medical Writer Marilynn Marchione contributed to this report.

Tags: AP Television News, Arthur Caplan, bioethicist, comatose, Dr. Steven Laureys, Linda Wouters, Rom Houben, SDNN, speech therapist, University of Pennsylvania, vegetative state

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