Physicians Help a Boy Who Could Never Sleep

January 26, 2009 12:27 PM
by Lindsey Chapman
A rare brain condition called Chiari malformation kept a 3-year-old boy awake almost 24 hours a day.

The Challenge of Sleep

Long after his body would become fatigued and need to rest, 3-year-old Rhett Lamb’s mind would keep him awake. Rhett slept about two hours a day, ABC News reported.

Rhett’s parents were frightened at their son’s problem, and frustrated as well. “He was in a bad mood all the time,” Rhett’s mom explained. “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.”

“It was like he was losing his mind and there was nothing we could do to help him,” Rhett’s father, David, told ABC News.

Rhett’s parents took him to dozens of doctor’s visits before he was finally diagnosed with Chiari malformation, a brain condition that causes the lower part of the brain, the cerebellum, to extend out the bottom of the skull, pressuring the brain and spinal cord. According to the Montrose Daily Press, the condition is “frequently under-diagnosed” by medical professionals.

In fact, before diagnostic technology for Chiari malformation improved in 1985, it was mostly found through autopsies, according to the Cincinnati Enquirer.

Brett Foster, a teenager with the condition, also knows the pain Chiari malformation can cause. Before having surgery, he experienced such frequent and terrible headaches from his problem that he began passing out and his arms went numb. Brett’s doctor said his brain herniation from Chiari malformation, which measured 23 millimeters, was the second largest he’d seen that didn’t have more severe side effects.

Brett could have been paralyzed or died from his problem. Surgery was successful in alleviating many of his symptoms; Chiari has no cure.

For Rhett, surgery to relieve the pressure on his brain and spinal cord was successful, and he finally began sleeping normally. The youngster, who was functioning at the level of an 18-month-old and couldn’t speak, also began catching up to his peers developmentally.

Rhett’s mom told ABC she is thankful for her son’s improvement and the changes his surgery has brought. “You couldn’t give him a hug or touch him or anything, and now he walks through the door and wants a big hug,” she 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.’”

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Key Players: Hans Chiari and the Chiari Institute

In the 1890s, professor Hans Chiari, a German pathologist, became the first person to describe brain abnormalities where the skull meets the spinal cord. He ranked the problems by severity, with types I, II, III and IV.

Today, the Chiari Institute, named in the professor’s honor, is known as “the world’s first comprehensive, multidisciplinary center” for helping patients with Chiari malformation. According to the institute, the diagnosis and treatment of Chiari malformation has yet to be standardized in the medical community, and the organization is working to address that situation.

Reference: Chiari malformation resources


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