Relief for Children with Down Syndrome and Sleep Apnea
Relief for Children with Down Syndrome and Sleep Apnea
For years, Liberty Kluse and her son Spencer navigated a familiar and exhausting routine: disrupted sleep, trial-and-error treatments, and few lasting solutions.
Spencer, now a teenager, was diagnosed with Down syndrome at birth and later, at age 6, with severe obstructive sleep apnea—a condition that repeatedly interrupted his breathing throughout the night.
“He was up almost every night,” Kluse says, “which meant we were up.”
Like many families, they tried using a continuous positive airway pressure (CPAP) machine on and off throughout Spencer’s childhood and teenage years, a common prescription for those with sleep apnea. But it wasn’t working.
“He would take the hose off at night, so it sounded like it was on—but it wasn’t,” Kluse says.
After years of sleepless nights, Melissa Maloney, MD, and Jill Jeffe, MD, conducted a sleep study on Spencer at Pediatric Sleep Center at Primary Children's Hospital.
They found he had 100% obstruction of his airway at night from the placement of his tongue, so they proposed a new solution.
Key Points
- Jill Jeffe, MD, helped to spearhead the Inspire Implant surgery in Utah, an alternative solution for kids with Down syndrome who struggle with sleep apnea and don’t tolerate a CPAP machine.
- Spencer, a local Utah teenager, received the Inspire Implant device and found relief after a lifelong battle with sleep apnea.
- The Pediatric Sleep Center at Primary Children's Hospital and partner physicians from U of U Health are now attracting patients from across Utah, Idaho, and Wyoming.
A Promising Alternative for a Persistent Condition
The Inspire Implant is a small medical device that stimulates the nerves in the tongue during sleep. It moves the tongue forward to open airways.
Jeffe is the first pediatric otolaryngologist (ear, nose, and throat specialist) to perform the surgery in Utah. Maloney, a pediatric pulmonologist and sleep medicine specialist, also serves as medical director of the Pediatric Sleep Center. When confronted with real-world challenges, physicians like Jeffe and Maloney exemplify U of U Health’s dedication to prioritizing patient-focused solutions that increase quality of life.
For children like Spencer, who could not tolerate a CPAP machine and still struggled with sleep apnea, Jeffe offered hope.
She also supported the Kluse family in trying the new procedure, which has led to positive results.
“Most nights, he sleeps through the night now—it works,” Kluse says, referring to the Inspire Implant device, which parents and kids can control with a small remote. “When we put him to bed, he actually asks for us to turn it on.”
Ultimately, Liberty and Spencer’s positive experience paved the way for families seeking a similar medical solution.
“The thing that draws many of us into surgery is the idea of making an instant impact. Following patients throughout their childhood and working with families is a really positive experience.”
Why Sleep Apnea Is Common
Countless families have long sought an alternative solution for their kids with Down syndrome, who are often diagnosed with severe obstructive sleep apnea.
“Children with Down syndrome often have a tongue relatively large to the size of their mouth,” Jeffe explains. "When they lay on their back, that tongue falls backwards, and that’s where the obstruction comes from.”
This is not an uncommon medical condition; about 50% of kids with Down syndrome have obstructive sleep apnea. That number jumps to 75% after the age of 12.
Unlike adults, whose sleep apnea shows up as lethargy during the day, symptoms for kids include excessive energy, irritability, and difficulty paying attention. For this reason, many kids go undiagnosed. Maloney says many families who have children with Down syndrome have lived with sleep apnea for years.
Common recommended treatments include a CPAP machine or a tonsillectomy, where tonsil and adenoids in the back of the mouth are removed. But these procedures don’t always help children with Down syndrome, whose sleep apnea results from the shape and placement of their tongues.
Spencer received a tonsillectomy at a young age and struggled with a CPAP until age 17—and he still couldn’t breathe at night.
“They didn’t know their child could feel different during the day because that’s how it’s always been.”
Better Sleep, Brighter Futures
Like any medical device, the Inspire implant requires adjustment. Families must learn new routines and attend follow-up appointments. But for many children, the payoff extends far beyond nighttime.
For the Kluse family, the difference is clear. Spencer now wakes up rested and enjoys attending Murray High School, where he plays basketball with his friends.
“Personality-wise, he’s more of a happy kid,” Kluse says. “The Inspire Implant definitely helps him. He’s not so tired, and he gets up in the mornings.”
For families who have spent years navigating disrupted nights, that kind of change can feel transformative. Such outcomes are the goal at the Pediatric Sleep Center, where physicians from Intermountain Health and U of U Health collaborate.
As the only clinic of its kind in Utah, the sleep center brings together multi-disciplinary specialists to diagnose and treat even the most complex cases. Innovations like the Inspire Implant may attract even more patients who choose University of Utah Health as their preferred place of care.
“A lot of families are frustrated,” Jeffe says. “Their kids are sleeping terribly, and they’re trying to use CPAP, which is not working. To have another option is really exciting.”
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