Jan. 23, 2009 — -- Not long ago, saying goodnight to his mom and dad was nearly impossible for 3-year-old Rhett Lamb. In a case that baffled doctors, Rhett was awake nearly 24 hours a day.
"His body would give out but his mind wouldn't; he'd still be awake," said Rhett's mom, Shannon Lamb. "He'd still be alert. It was extremely scary."
One of the side effects of Rhett's lack of sleep was bad behavior.
"He was in a bad mood all the time," Lamb said. "He couldn't play, he didn't interact with other children. His frustration level was so high, and it just kept getting worse and worse and worse. He couldn't communicate with anyone. It was heartbreaking."
Rhett's temper got so bad he would hit his mother, even giving her black eyes.
"He would hit you, he would bite you, he would head butt you and anything else around him, and you didn't know from one minute to the next what was going to happen," she said.
Rhett's dad David Lamb said, "It was like he was losing his mind and there was nothing we could do to help him."
The Lambs, who live in St. Petersburg, Fla., arranged opposite work shifts so one of them could stay home and take care of Rhett.
"You get to the point where you can't function anymore and you can't think straight, and you get up in the morning and you take a shower to go to work and you drive to work and you're a robot," Shannon Lamb said. "You are an absolute robot. And then you dread coming home 'cause you know it's the same thing."
After dozens of doctors' visits and years of conflicting opinions, Rhett was finally diagnosed with a rare brain condition called chiari malformation.
Chiari malformation is a neurological disorder in which the bottom part of the brain, the cerebellum, descends out of the skull and crowds the spinal cord, putting pressure on both the brain and spine, causing a number of symptoms, including sleeplessness.
Once diagnosed, doctors were able to perform a risky surgery that offered a 50-50 chance Rhett would be able to sleep normally for the first time.
Rhett Up to Speed
Dr. Gerald Tuite, a pediatric neurosurgeon at All Children's Hospital in St. Petersberg, made an incision from the base of Rhett's skull to the top of his neck to remove bone around the brain stem and around the spinal cord, producing more space and reducing the pressure.
The surgery was a success. Rhett was finally able to sleep through the night, and his behavior improved dramatically.
Because of the disease, he was functioning at the level of an 18-month-old and couldn't even speak. But in a matter of months, he has almost caught up to his peers, and for the first time in his life, he is interacting with other children.
It's a time the Lambs thought would never come.
"You couldn't give him a hug or touch him or anything, and now he walks through the door and wants a big hug," Shannon Lamb said. "And it's heartbreaking at this point because you just look at him and think, 'This is something I never thought I would have.'"
To find out more about chiari malformation, visit www.conquerchiari.org or theNational Institute of Health Web page.