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• Posted April 11, 2024

Most Kids With Down Syndrome Have Sleep Apnea, But New Implant Can Help

Four-year-old Theo Scott was born with Down syndrome, and since the age of 1 he's also had to wear a CPAP device whenever he sleeps, to help ease his sleep apnea.

He's not alone: Eight out of 10 kids with Down syndrome have sleep apnea.

Luckily for Theo, his nightly CPAP ordeal may be over. He's the first very young patient with Down syndrome to receive a new hypoglossal nerve stimulation implant at Mass General Brigham Hospital, in Boston.

The implant works on a simple premise: Whenever it senses that an airway is blocked, it sends an electrical pulse to the tongue's hypoglossal nerve. That causes the tongue to move forward within the mouth, freeing up the airway.

It's worked wonders for Theo, his parents Rachel and Andrew Scott said in a statement.

"The most significant change we have seen is the amount of sleep Theo is now getting, routinely over 10 hours a night versus what we experienced with CPAP where he would pull his mask off up to fifteen times a night," the Scotts said. "Theo sleeping through the night has also benefitted us as parents since we would need to get up and assist him, and we could each feel the toll poor sleep was taking on our health."

Doctors at Mass General published their case study outlining Theo's treatment in the April 11 issue of Pediatrics.

Sleep apnea is especially common in young children with Down syndrome because of a number of factors, the Mass General team noted. Children with Down syndrome tend to have smaller airways, as well as larger tongues, tonsils and/or adenoids, compared to typical kids. All of that can contributed to blocked airways during sleep.

The hypoglossal nerve stimulation device used in Theo's case is made by Inspire and was first approved for by the U.S. Food and Drug Administration for use in adults in 2014.

Its benefits for adults had study lead author Dr. Christopher Hartnick wondering if the device might help kids with Down syndrome who also battle sleep apnea. He directs pediatric otolaryngology at Mass Eye and Ear.

Hartnick's team first set up a trial looking at the device's effectiveness for older children and young adults with Down syndrome, ranging in age from 10 to 22.

Those results were published in 2022 and were so positive that the FDA extended approval of the Inspire device to people with Down syndrome ages 14 and older.

Theo's case was the first use of the implant in a preschooler, with the surgery taking place in May of 2023.

The procedure went off without complications, and adjustments were made in accordance with Theo's growth.

Results came quickly: Just one month after having the device implanted, his "obstructive apnea-hypopnea index" (a measure of sleep apnea severity) fell by 40%, the Boston team reported.

Other benefits stemming from Theo's improved sleep have been varied and impressive, his parents said.

"We have also noticed Theo wakes up more easily in the morning and has a longer attention span than before the surgery, and his language development has accelerated from one-word statements to multiple word sentences," they said in the statement. "This procedure has absolutely been a game-changing intervention in Theo's life and in our family's."

Hartnick said he and his colleagues have already launched a four-year study to track changes in thinking and language in young patients with Down syndrome after placement of the device.

"Children with Down syndrome are disproportionally affected by obstructive sleep apnea and often don't benefit from traditional interventions, and research shows this impacts their cognitive development and IQ scores,"Hartnick said in a hospital news release.

Study co-author Dr. Brian Skotko, who holds the Emma Campbell Endowed Chair on Down Syndrome at Mass General, believes hypoglossal nerve stimulation is a real advance for these kids.

"In our Down Syndrome Program, I see firsthand how frustrated families become when their child with Down syndrome runs out of options to treat significant sleep apnea,"Skotko said. "Theo now opens up a new frontier for research and potential clinical care."

More information

Find out more about Down syndrome's effects on sleep at the National Down Syndrome Society.

SOURCE: Mass General Brigham, news release, April 11, 2024