When James Fitzpatrick was a year old, he breathed so loudly that his mother, Soula, says, “He kind of sounded like Darth Vader.” His nose was always runny and plugged. During the previous four months, James had hardly gained any weight. Worst of all, when he slept, he would stop breathing. “It would happen every couple of minutes,” recalls Fitzpatrick from Montreal. “It was horrifying to watch him lying there. So I’d move him and I’d count down the days until we’d have a checkup.”
After dozens of restless nights and medical appointments, James was finally diagnosed with obstructive sleep apnea (OSA). It’s the same disease that most people think only affects overweight, middle-aged men. But three per cent of children have OSA—one out of every four or five kids who snore, a common symptom. And the prevalence is escalating due to the rise in childhood obesity.
Usually OSA occurs when the airway is blocked during sleep, either because it’s narrow, or the tonsils and adenoids are enlarged, or the muscles that keep the airway open go floppy. “Pretty soon, the oxygen [intake] starts to go down and the child wakes up to save himself from asphyxiating,” explains Dr. Robert Brouillette, a pioneering pediatric sleep specialist at the Montreal Children’s Hospital. “So it’s good the child wakes up, but it’s bad because it disturbs sleep as if he weren’t sleeping at all.”
More and more, we’re learning about the potentially devastating and far-reaching impact of apnea on children. The insufficient supply of oxygen to the brain may lead to a diminished IQ. The sudden surge in heart rate when a child rouses several times during the night can cause cardiac stress. Bad sleeps due to apnea leave some children grumpy, aggressive and distracted—all characteristic of the behaviour associated with attention deficit hyperactivity disorder. In fact, up to 40 per cent of kids improperly diagnosed with ADHD actually have apnea.
Getting James diagnosed was a harrowing experience for Fitzpatrick and her husband, Philip. When their son was eight months old, the pediatrician told them that James would eventually grow into his enlarged tonsils and adenoids. In fact, most kids have lymphoid tissue that’s too big for their bodies and never suffer apnea; by adolescence, the size normalizes. But a few months later, when James didn’t improve, his mother took him to the ER. That led to James seeing an ear, nose and throat specialist, who ordered an apnea test—to be done in three months, at the earliest.
“Then I just kind of lost it,” remembers Fitzpatrick. “I started crying. My husband said, ‘I don’t know what else we can do.’ ” Fortunately, James happened to have an appointment with his allergist sooner. An X-ray showed no air could pass between his nose and throat. Almost immediately, his mother received an at-home testing machine from the Montreal Pediatric Sleep Laboratory, where Brouillette is the director. James’s oxygen levels were measured while he slept via a pulse oximeter, a bandage-like device wrapped around his toe. The result: James had the worst case of OSA the staff had seen in years.
Within 24 hours, James had an adenotonsillectomy, a surgery to remove the tonsils and adenoids, which is the most common treatment for pediatric OSA. The outcome was astounding. “It was just complete night and day,” says his mother. Now, when he sleeps, James is quiet and peaceful. When awake, he’s happier. And post-surgery, “he ate like an animal,” she adds with relief.
The only concern now, says Fitzpatrick, is whether those poor sleeps have left a mark on James. Just 14½ months old, he isn’t speaking as much at that age as his older brother, Conor (who, incidentally, was diagnosed and treated for OSA shortly after James). Fitzpatrick wonders if that’s because of apnea. But so far he appears robust.
Her worries are justified, though. Dr. James Jan, a pediatric neurologist at the B.C. Children’s Hospital in Vancouver, has studied children with disabilities and OSA, and says that prolonged and untreated sleep deprivation causes the neurons in the brain to be stressed and eventually die. That translates into a loss of IQ. On average, children with OSA see a six- to eight-point drop in IQ—though some will lose more or none, says Gozal. If a child is born with a high IQ, a decrease may not matter. But in kids with an average IQ of 100 points, such a decline “makes the difference between going to college or not,” he explains.
The good news is that if children are treated early, lost IQ can be restored. In a groundbreaking study 11 years ago, Gozal showed that among the worst-performing first-graders at schools in New Orleans, the prevalence of OSA was sixfold that of the general public. Many were treated, and a year later, he says, “lo and behold, the group had actually improved their grades.”
Unfortunately, many kids with learning or behavioural problems due to apnea are misdiagnosed with ADHD, partly because the symptoms are similar. Some children “can’t concentrate, they’re hyperactive, they have emotional outbursts. It goes on,” says Jan. In their well-intentioned urgency to help, some physicians diagnose ADHD without going through rigorous diagnostic criteria, says Gozal. Separate studies by him and others show that between 35 and 40 per cent of children are taking medication for ADHD when apnea treatment is required. But, experts emphasize, among kids properly diagnosed with ADHD, the prevalence of OSA is the same as for the general population.
Dr. Evelyn Constantin, a pediatric sleep specialist and assistant director of the Montreal sleep lab with Brouillette, cautions physicians against promising adenotonsillectomy as a cure-all because her research has shown it doesn’t always result in better behaviour. Fitzpatrick’s son Conor, for one, is still hyper before bed. “So I’m not sure if that [was] part of the apnea, or if that’s just him,” she says.
Constantin is also researching the impact of OSA on children’s hearts. The sudden and frequent waking up can cause cardiac stress. Kids with OSA often have high blood pressure, too. In adults with apnea, these symptoms put them at increased risk for a heart attack. It’s not clear what it means for kids, says Constantin, but “it’s not a good thing.” Her recent study, fortunately, has found that once children are treated they no longer have higher heart rates.
While the understanding of OSA is growing, so is the disease’s prevalence. As more children are becoming obese, doctors are diagnosing them with a version of apnea that looks more like what adults suffer because it’s caused by the position of fat in the upper airway, not just enlarged lymphoid tissue. Gozal refers to it as “Type 2” apnea. “Type 1 is the scrawny kid with big tonsils,” he says. Even adolescents, whom Brouillette says have historically been unaffected by OSA, are now coming into his lab for treatment.
Taken together, the rising prevalence of OSA and additional health risks make for an unsettling situation for kids. What’s more, adds Jan, “every time a child doesn’t sleep, the parents don’t sleep.” The authors suggest developing pediatric sleep services at the local, provincial and national level, including a professional network for doctors, and public awareness campaigns. Already there are signs of change. More hospitals are recognizing the importance of having sleep labs for children. A mountain of research has legitimized the importance of treating OSA. Another reason for change: it’s hard to ignore a disease that is being diagnosed more often.
For Fitzpatrick, who still keeps an intercom at her bedside so she can hear her sons breathing, a good night’s sleep has never been more welcome.