The Girl Who Can't Feel Pain

ByABC News via GMA logo
December 8, 2005, 1:48 PM

Dec. 9, 2005 — -- At a few days old, baby Gabby Gingras slept through the prick of a blood test. And in the mornings, she would be in her crib, quiet, but freezing cold to the touch.

"She'd be amazingly cold, but then she'd wake right up and be happy," said Gabby's father, Steve Gingras, in a new documentary called "A Life Without Pain" (www.alifewithoutpain.com) directed by Melody Gilbert.

It turns out she didn't react to the pain of a needle or the cold because she couldn't feel it.

"Pain teaches," said her mother, Trish Gingras. "Pain protects. Pain can save you from a lot of bad things in life."

Gabby, who is 5, suffers from an extremely rare disorder called congenital insensitivity to pain. For unknown reasons, the connection between the nerves that sense pain and the brain's recognition of pain is missing. Her other sensory areas -- touch, heat, vibration, and the ability to perceive movement -- are normal.

She also suffers from a linked problem, anhydrosis, which means she cannot sweat. This makes it harder for her to keep her body temperature stable.

The inability to feel pain, which at first blush seems like a gift, is, in fact, a devastating disability. Every childhood milestone has become a new danger instead of a joy. That's because Gabby can't tell when she's hurting herself.

"She started cutting teeth and she had bit down through the skin. She would have bit down to the bone had I let her. It was just chewed up," Trish Gingras said.

"We decided to pull her teeth because she was mutilating her fingers," Steve Gingras said.

Learning to walk just made Gabby more vulnerable. By the time she was 2½, she had been injured and hospitalized multiple times. At age 2, Gabby broke her jaw and didn't know it until infection caused a fever. To treat the infection, she had to be on an IV medication for six weeks.

Her eyes were especially at risk.

"You'd look away for one second, you'd look back and she'd have her fingers in her eye," Steve Gingras said. "You're watching your child go blind right in front of you."

Her desperate parents tried restraints and then goggles. But by the time Gabby was 4, she needed to have her left eye removed. Her right eye was also damaged, and she wears a lens over it to help her see better. Although Gabby is legally blind with 20/200 eyesight, she can still see shapes.

Even playing with the family dog or romping around the backyard poses huge threats.

"We've told her that it was good to say 'ouch,' because it lets people know she's bumped, or you know, hit something," Trish Gingras said.

Her older sister, Katie, 8, played an important role in teaching Gabby when to say "ouch."

Gabby's condition hasn't been easy on Katie.

"It's very difficult because when your little sister has to go to the hospital, you have to be left alone with other friends and you miss your family," she said.

The Gingrases know that Gabby's challenges will last a lifetime.

"We've met families that have lost their kids," Trish Gingras said. "So what if our kid ends up blind, so what if she ends up in a wheelchair? We've got her. We can hold her, we can love her. We'll do everything we can to fight for her, to protect her."

You can learn more about "A Life Without Pain" at www.alifewithoutpain.com.