Comatose for 23 years, Belgian feels reborn
BRUSSELS – 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. Finally...able 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."
--AP