The Boy Who Couldn’t Sleep: Boy Stayed Awake 24 Hours for Years

Rhett Lamb, 3, Stays Awake Nearly 24 Hours a Day
By ANDREA CANNING and MELLEN O'KEEFE

May 10, 2008 —

Rhett Lamb, 3, is often irritable, but it's not just the routine growing pains of a toddler's life that has affected him. It's the fact that Rhett can't sleep.

"We went to the doctor after he was born, and I kept telling him something was wrong. He didn't sleep. They thought I was being kind of an anxious mom, and we went back and forth," Rhett's mother, Shannon Lamb, said. "Finally, they [were] starting to realize now that he really doesn't sleep at all. But we've had a lot of different diagnoses and nobody really knows."

His sleep deprivation caused made him very irritable.

"That's going to have a great impact on his behavior during the day -- his irritability, his ability to eat -- and I'm sure it also impacted the parents tremendously," said Marie Savard, an ABC News medical consultant.

Rhett is awake nearly 24 hours a day, and his condition has baffled his parents and doctors for years. They took clock shifts watching his every sleep-deprived mood to determine what ailed the young boy.

After a number of conflicting opinions, Shannon and David Lamb finally learned what was wrong with their child: Doctors diagnosed Rhett with an extremely rare condition called chiari malformation.

"The brain literally is squeezed into the spinal column. What happens is you get compression, squeezing, strangulating of the brain stem, which has all the vital functions that control sleep, speech, our cranial nerves, our circulatory system, even our breathing system," Savard said.

In order to relieve the pressure on Rhett's brain stem, doctors performed surgery this week that they hope will allow him to sleep properly for the first time in his life. Surgeons made an incision at the base of Rhett's skull to the top of his neck and removed the bone around the brain stem and spinal cord, which produced more space.

"Doing the decompression, relieving that pressure, should absolutely improve those symptoms," Savard said.

Still, doctors said the Lambs may not see major changes for several months or possibly even a year. But Rhett's parents hope their son will be able to get some rest and be normal.

"There is a 50-50 chance that the sleep will improve," Shannon Lamb said. "Once the sleep improves, we can work on the behavioral stuff. He's very irritable all of the time.

"I would love to see him play and have a good time and be happy," she said.

UPDATE:

By ANDREA CANNING and ANNA WILD

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.

ABC

Three-year-old Rhett Lamb was awake nearly 24 hours a day until he was diagnosed with a brain disorder, chiari malformation, and survived a risky operation.

The Boy Who Couldn't Sleep Watch Video

Treatments for Insomnia: Rewiring Your Brain Watch Video

Solutions for Women With Sleep Apnea Watch Video

"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."

Finally, a Diagnosis

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.'"