"Disorder gives child no pain"
Mike
imperfecta?
Thanks
Mike
Disorder gives child no pain
By Kristen Wyatt
ASSOCIATED PRESS
Published December 29, 2006
EASTON, Md. -- Micahlah Brothers' baby pictures spread on the coffee
table make it clear she was no regular child.
One shows a 7-month-old Micahlah with her leg in a cast, the baby
grinning ear to ear.
Others show her in a full-body cast or with bloody fingers and bits
of tongue on her chin. In every one, the girl, now 11, is smiling as if
nothing is wrong.
Micahlah looks over her baby pictures and chuckles, then puts her
hands at her waist.
"I've broken every bone from here down at least twice," she said.
In her sixth-grade class, she explains, "they have to keep an extra set
of eyes on me in case I could fall or trip and I wouldn't know
something was broken."
Micahlah is one of only 100 or so people worldwide with a genetic
flaw that makes them indifferent to pain.
It's a condition that sounds great -- but it's deadly serious for
parents trying to raise a child who can't feel burns if they put their
hands on a hot stove and children who bite through their own tongues
and fingers while they teethe.
Micahlah's mother, Valerie Haddaway, said she initially thought
Micahlah was just a happy baby.
Miss Haddaway recalls taking Micahlah, her second daughter, for her
first shots at six weeks and being amazed the baby didn't cry.
"I thought, 'That's cool. My baby's not screaming and crying,' "
Miss Haddaway said. "Then as her teeth started coming in, she would
bite into her lip. And draw blood. I realized I never really heard her
cry. When she would be wet or hungry, she would get fussy, but not like
any other baby who screams and cries."
Miss Haddaway grew increasingly worried about her daughter, who
seemed perfectly happy.
Then, soon after Micahlah learned to sit up, the child tried it one
day from a prone position and broke her right leg.
One of the paramedics Miss Haddaway called threw up when he saw a
giggling baby with a leg facing the wrong way.
At the hospital, doctors were skeptical that Micahlah could have
broken her femur herself.
"All of a sudden the doctor's face turns into a rage and he looks
at me like I'm a monster from hell. And he says, 'How dare you break a
baby's leg?' " Miss Haddaway recalled.
Miss Haddaway tried to explain that there was something wrong with
her baby, that Micahlah never seemed to feel hurt, but authorities
didn't believe her at first.
Both of Miss Haddaway's daughters were taken into state custody for
two days until a student nurse at a nearby hospital found a note in a
medical journal about a condition called congenital indifference to
pain.
After about a year of tests, Micahlah was diagnosed.
The disorder is caused by a rare genetic malfunction that impairs
either the brain's ability to register pain or the nerves' ability to
send pain messages. Doctors aren't sure which.
"It's like a short-circuit or a cell phone that goes out of range,"
Miss Haddaway explained.
The condition is so rare that most doctors have never seen a
patient with it. Micahlah's doctor, Easton pediatrician Mark Langfitt,
said abuse charges are common in instances of pain disorders like
Micahlah's.
"Nobody believes it," Dr. Langfitt said. "The problem for the
family that has a child like this, there's always a suspicion of abuse,
because you can't believe that a child can't feel pain."
Tricia Gingras of Oak River, Minn., has a 6-year-old daughter,
Gabby, with a similar disorder and says doctors weren't sure what to
make of a child who mutilated herself but didn't seem to mind.
"We were seeing a neurologist who was telling us there was nothing
wrong with her," Miss Gingras said.
Gabby later scratched her cornea and continued to pick at her eye
until she lost vision in it. It took months for a diagnosis.
Caring for a child who doesn't feel pain requires round-the-clock
supervision, Miss Gingras said. "Little ones just don't understand that
they're hurting themselves."
Micahlah so far has escaped serious injury -- though she's bitten
off most of her taste buds and has a limited sense of taste and smell.
Micahlah attends regular school and plays outside with her dog in
the afternoons.
But some typical childhood pursuits, like riding a bicycle, are
dangerous for Micahlah.
School is a danger zone, too -- especially when Micahlah acquired a
fondness for the television show "Fear Factor" and showed classmates
she wasn't afraid of leaping from high places.
At first, Miss Haddaway said, other children didn't believe that
Micahlah couldn't feel pain, so they made her prove it.
"She's been shoved down stairs. She came home beat up all the
time," Miss Haddaway said.
Unintentional injuries happen, too. Miss Haddaway confessed that
she recently slammed Micahlah's hand in the car door and neither
realized it at first.
Micahlah and her family have never met anyone else with the
disorder, so it's a lonely burden for them. con
"You can't go to a PTA meeting and say, 'Today my kid bit off her
tongue' and have another parent say, 'I know just what you're going
through,' " Miss Haddaway said.
Micahlah doesn't seem to mind her disorder -- maybe not surprising
for a child who has all her senses, just not the capability to register
pain.
"Mostly the grown-ups worry for me. I don't worry about myself that
much," Micahlah said. "If the doctors would be able to reverse the
disorder of not feeling pain and asked me if I wanted it, I would
refuse. I'm scared of feeling pain."
Dr. Langfitt, however, said pain is a lifesaving sensation.
"It's a very important feedback from your body learning how to do
basic functions," he said.
Miss Haddaway agreed. "You think you don't like pain, but you don't
know how lucky you are," she said. "Pain really does save your life."
BuZZard
bones very brittle.. and when we break bones, we totally feel the
pain 110%.
This congenital indifference to pain.... means the person
simply does not feel pain.. and would break a leg... just as if
it were a person without any disease.. only... that person would
not feel the pain of the break. It would take alot of pressure to
break that persons leg.. as opposed to a person with OI...
it takes little pressure to break a leg.. plus.. we feel the horrible pain.
I feel bad for the girl with the disease you brought up.
Jeff.
"Mike" <yard...@yahoo.com> wrote in message
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