Sleep Apnea: Matthew Mackowiak Finally Gets Some Rest
"He was so tired of being tired"
Matthew and his mom Sarah play around during a recent visit to the Cincinnati Zoo & Botanical Garden.
At 6 years old, Matthew Mackowiak was averaging two hours of sleep each night. Severe sleep apnea kept him from getting the rest he so badly needed and left him exhausted each day. He struggled simply walking from the house to the car. After receiving care from the Cincinnati Children's Sleep Disorders Center, Matthew is sleeping close to eight hours a night and he now wakes up smiling and full of energy.
Matthew was so tired he hardly spoke. He could make it to the park, but then, completely zapped of energy, he could do nothing more than sit and watch the other kids play. At 6 years old, he was sleeping an average of just two hours each night, while kids his age typically need 10 hours of sleep.
"Matthew has had respiratory issues since birth, but at age 3 it got to be really bad," says his mom Sarah of Washington Court House, Ohio. He had difficulty breathing which affected his sleep, so much so that he had to sleep sitting up in a recliner. Over the next three years, Sarah searched for medical care for her son. His adenoids and tonsils were removed, which helped him to breathe better. But he still wasn't sleeping at night.
Matthew became exhausted both physically and mentally. He began experiencing severe anxiety. Too tired to be active, he started gaining weight. He struggled just to put his shoes on. Then, to Sarah's dismay, he started forgetting the alphabet. At school, he was put on an Individualized Education Program (IEP), designed for children who require special education.
"He required 100 percent time and attention all the time, day and night," Sarah recalls, adding that she had to quit work to care for him full time. She continued to agonize over Matthew's troubles while she became increasingly more exhausted herself. When she wasn't working at helping her son fall asleep, she was watching over him to make sure he didn't have problems breathing as he slept.
Help at Last
In 2005, Matthew and Sarah were referred to the Cincinnati Children's weight management program, HealthWorks!, due to Matthew's increasing weight problems. As the HealthWorks! psychologist probed deeper into the root of Matthew's difficulties, she suggested he visit genetic specialist Brad Tinkle, MD, PhD.
"The minute we got to Cincinnati Children's, our care was coordinated," Sarah says. "They were very prompt and very good at prioritizing."
After a string of appointments with various specialists, Matthew's problems were narrowed down to three specific areas: chronic ear infections; severe sleep apnea, where his breathing was intermittently blocked while he slept; and weight gain, a common side effect of sleep apnea. He and his mom eventually ended up in the Sleep Disorders Center at Cincinnati Children's. Sarah found it hard to believe that a "sleep team" focused specifically on sleep problems actually existed.
Because Matthew had problems in several areas, his care was coordinated among several physician specialists. Numerous nurses and respiratory therapists also gave the family support. Matthew had been to so many doctors in his life that "he was anxious and fearful of hospitals," his mom says. "But everyone at Cincinnati Children's did everything they could do to alleviate his fears."
Journey to Health
Matthew soon started a medical journey that would eventually have an impact on his entire personality. In May, J. Paul Willging, MD, removed ear tubes that had been placed in Matthew's ears to help prevent ear infections. August brought a continuous positive airway pressure (CPAP) trial with Maninder Kalra, MD, MS. In this trial, Matthew wore a mask that forced air into his airway in an attempt to keep the airway open at night. Matthew didn't tolerate the mask, but Dr. Kalra wasn't deterred. In September, Dr. Willging performed an MRI of Matthew's airway, where it was found that Matthew sucked his tongue and uvula as he slept, while his airway collapsed.
"After that, [the team] came up with three or four different options for us," Sarah says. "As a parent, you want to do the least invasive thing with the most success. And they wanted to do that, too. They were looking at every aspect of Matthew's life, not just the medical side."
The decision was for Matthew to have surgery. The surgeons worked for an hour thinning out Matthew's tongue, removing his uvula, cutting out old scar tissue, removing his adenoids that had grown back since his previous surgery, and reshaping his upper airway.
A New Matthew
"The minute he came out of surgery, he looked like a different child," Sarah says.
Matthew had plenty of energy to win his first karate trophy once he began getting ample sleep at night.
"The next day his speech was improved. Within two weeks, he went from two hours of sleep a night to six hours." Sarah couldn't believe the change in Matthew's disposition. Finally able to rest, Matthew at last had energy to be a kid. "His whole personality has changed," Sarah says. "People who have known him since he was a baby wonder what's happened to him, what's changed him."
Formerly lethargic and quiet, Matthew now bounds out of bed talking a mile a minute. Formerly sullen and anxious, he now charges around with the other kids on the playground. During a recent trip to the zoo, he raced back and forth delighted to follow a polar bear from water to land and back to water again. He just brought home his first karate trophy. He's no longer gaining weight.
Sarah wipes away tears as she talks about the results. "He was so tired of being tired," she says. "I never thought we'd see the day where he'd be on a scooter for two hours. It's been amazing what [the team at Cincinnati Children's] has done. They've changed my son's life, and they've changed my life. It's been a wonderful experience."
Matthew's schoolwork is improving as well. His teachers are astounded by the amount of information he's absorbing. He's earning all A's and B's, and plans are for him to eventually get off of the IEP.
Dreams Come True
Now a happy 7-year-old, Matthew is sleeping close to eight hours a night in his bed. "He can wake up and tell me his dreams now," Sarah says. Before, he never slept long enough to have a dream. Sarah has removed the recliner from his room. She looks forward to a day sometime soon when she can return to work, while Matthew looks forward to bringing home more trophies not only for karate, but also wrestling, soccer and basketball.
After years of sleepless nights and exhausting days, the beaming smile on Sarah's face expresses her gratitude. "I can lay my head down at night and not worry about my child. That's the greatest thing," she says. "If it wasn't for the sleep team, I know Matthew wouldn't be where he is right now."
Finding herself with such an enthusiastic child these days, Sarah says lovingly, "He's the child I always knew he could be."
Related Services
Back to the Cincinnati Children's Patient Stories main page.
