- The Washington Times - Thursday, December 28, 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.

“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.”

LOAD COMMENTS ()

 

Click to Read More

Click to Hide