Anna’s story: A game-changing procedure for obstructive sleep apnea

Anna remembers too many times when her daughter – also named Anna – would wake up on Monday mornings and ask her, “Rest on Saturday?” The question was a clear signal that her 15-year-old daughter couldn't wait to make it through another school week, because she woke up feeling so exhausted.

But now, after getting a device called Inspire Therapy Hypoglossal Nerve Stimulator to treat obstructive sleep apnea, Anna is finally getting a good night’s rest. This device was recently FDA-approved for children with Down syndrome and obstructive sleep apnea ages 13 and up.

“For the longest time, Anna was quiet, had no energy, and was hard to reason with,” her mom says.

Sleep apnea in kids with Down syndrome

When Anna was just three years old, she and her mom went to visit her uncle in North Carolina. Having obstructive sleep apnea himself, he started to worry when he noticed pauses in his little niece’s breathing as she slept in her car seat. He suspected obstructive sleep apnea – and he was right.

Obstructive sleep apnea is a sleep disorder where a person experiences pauses in their breathing while they sleep because something is blocking their airway (usually the tonsils and/or adenoids at the back of the throat). These pauses in breathing interrupt the sleep cycle and can happen over and over again, making it very hard to get enough quality sleep.

“It really takes a toll,” says Ron Mitchell, M.D., Pediatric Otolaryngologist and Division Director at Children’s Health^SM and Professor at UT Southwestern. “Think of the last hour or two of the day when a kid should be going to bed but isn't. They're irritable and have attention problems. These kids are like that for the whole day.”

Kids with Down syndrome often have more severe cases of sleep apnea, with longer pauses in breathing and waking up more frequently.

Anna eventually had her tonsils and adenoids removed. This typically helps, but may not eliminate obstructive sleep apnea entirely in kids with Down syndrome.

“With Down syndrome, the structures in the face are typically closer together and they typically have lower muscle tone, which makes it harder to keep the airways open during sleep. They’re also more likely to have excess weight, all of which contribute to obstructive sleep apnea,” Dr. Mitchell says.

Anna’s obstructive sleep apnea persisted. Her mom slept in her room for years, turning her onto her side from her back to help open her airways – and fearing every pause in her breathing.

The next line of treatment is a CPAP machine, a device that keeps the airways open at night. It requires wearing a fitted mask while you sleep. Anna knew that would be very hard for her daughter.

“She has some sensory issues, she doesn’t even like the feeling of most clothes on her skin,” Anna says. “So trying to get her to sleep with a mask on her face was a disaster.”

That’s when her mom started looking for other options – and read about a study in Boston for a new obstructive sleep apnea device for kids with Down syndrome.

Everything fell into place

To qualify for the study, Anna needed an updated sleep study – another hard sell for a kid who is sensitive to sounds and sensations. But the team at the Children’s Health Sleep Disorders Program specializes in working with kids and knows how to help them feel at ease during the process.

“We literally Facetimed with Anna’s dog Penny as they were sticking the sensors on her,” her mom says. “Facetiming with Penny was a great distraction. It was still hard for her, but it was absolutely worth it.”

Because Anna has allergies and asthma, they needed to wait until those symptoms cleared up before having surgery to place the device. By that time, this Inspire therapy was available at just one hospital in Texas – Children’s Health – thanks to Dr. Mitchell, Seckin Ulualp, M.D., Pediatric Otolaryngologist at Children’s Health and Professor at UT Southwestern, and their team.

“It felt like everything just fell into place and we were so grateful,” Anna says.

Inspire therapy

The Inspire Therapy Hypoglossal Nerve Stimulator is placed near the collar bone in a simple surgery. It works by moving the tongue forward to open up the airways and make it easier to breathe.

Like many moms, Anna was nervous about her daughter going into surgery. But she knew the care team and trusted that they would work together to provide the best possible care.

The surgery went off without a hitch and they were home the next day.

A stark difference

Anna feels like she got her daughter back – the joyful girl who breezes through puzzles so quickly that no one can keep up, then flips them over and solves them upside down. The girl who loves to help in the kitchen, especially when she and her mom make their specialty meal: Italian meatballs.

“With these kids, the difference with Inspire therapy is remarkable. Before they may be falling asleep in your clinic while you’re trying to talk to them or having behavioral issues or trouble in school,” Dr. Mitchell says. “But after they start to get good sleep, you can see right away how much better the child is doing – and that’s a joy.”

Anna tells as many families who have children with Down syndrome as she can about the importance of getting a sleep study, which is recommended for all kids with Down syndrome by age four, even if they don’t have symptoms of obstructive sleep apnea. She also tells them how life-changing this device has been for her daughter.

Learn more

Inspire therapy is FDA-approved for children with Down syndrome and obstructive sleep apnea for children ages 13 and up. Children’s Health is also part of a trial for this device in children with Down syndrome ages 10 and older. Learn more about our Ear, Nose and Throat Program and services.