A good night’s sleep is something 18-year-old Elly has wanted her entire life. Elly, who has Down syndrome, struggles with obstructive sleep apnea (OSA), a condition that causes her to repeatedly stop breathing during sleep. This causes her to feel sleepy during the day, which has made it difficult to concentrate at school and impacts her mood.
“Sleep apnea is a huge challenge for me and impacts my energy, my thinking and it also makes it hard to navigate my emotions,” described Elly.
But Elly’s dream of a restful night is closer to coming true. In December 2023, she became the first patient at Children’s Minnesota to be implanted with a device designed to treat OSA in people with Down syndrome.
Sleep apnea and Down syndrome
Approximately 80% of people with Down syndrome are affected by sleep apnea. Since she was very young, Elly and her parents, Connie and Greg, have done whatever they could to improve her sleep. The first line of treatment was to remove the tonsils and adenoids, which Elly had done when she was 2 and a half years old.
She’s also done several overnight sleep studies in the Children’s Minnesota Sleep Center, her first being when she was 19 months old, but her apnea continued to get worse. One of the studies done in 2021 showed she had moderate OSA. That led to having her lingual tonsils – which are found near the back of the tongue – removed that summer. She repeated the sleep study, but this time her OSA was graded as severe.
In 2022 and 2023, she tried both CPAP (continuous positive airway pressure) and BiPAP (bilevel positive airway pressure) machines, which require wearing a face mask to keep her airway open while she sleeps. But the masks would often come off while she was sleeping. Tolerating a mask is a common issue for many people, children and adults, who have sleep apnea and need a CPAP machine.
Through all this, Elly’s sleep apnea only got worse.
A new option
Before having her lingual tonsils removed 2021, Dr. Asitha Jayawardena from Children’s Minnesota’s Ear, Nose and Throat (ENT) and facial plastic surgery program told the family about a device called Inspire. The device is placed under the skin of the chest and, when turned on before sleep, sends gentle pulses that move the tongue out of the way which keeps the airway open and helps people breathe regularly. It’s controlled by a small remote.
At the time, the device was only approved for adults with sleep apnea. However, Dr. Jayawardena knew hope was on the horizon for patients like Elly. He had been part of a clinical trial at Harvard University that researched the use of Inspire for treating children who are at least 13 years old with Down syndrome struggling with sleep apnea.
On March 21, 2023 – World Down Syndrome Awareness Day – the Food and Drug Administration (FDA) approved the use of Inspire to treat children 13 years of age and older with Down syndrome and sleep apnea.
“Dr. Jayawardena called me personally on Down Syndrome Awareness Day to tell us that with FDA approval we’re one step closer to helping Elly and others get a good night’s rest,” remembered Connie. “Even though she had turned 18, we didn’t want to go to another clinic because he had followed Elly this whole time and has much more experience with kids with Down syndrome.”
Following FDA approval, Dr. Jayawardena and the ENT team needed the next few months to take the necessary steps to make the Inspire procedure possible at Children’s Minnesota. Finally, on December 11, 2023, Elly had the procedure to implant the device.
“Elly did wonderful. Our team was exceptionally prepared, and the surgery went flawlessly,” said Dr. Jayawardena, who performed the procedure with Dr. Andrew Redmann.
It’s moments like this that remind Dr. Jayawardena why he pursued his career. “The reason I went into surgery was to help people like Elly using cutting edge surgical innovations,” he said. “It was a long journey to get here, but it was worth it knowing her ability to get a good night’s sleep won’t hold her back from pursuing her dreams.”
Elly uses the device every night without issues. She sleeps all night and no longer needs to use the CPAP machine.
With restful nights ahead of her, Elly is excited to pursue her dream of becoming an ASL (American Sign Language) interpreter.