Pacemaker for the Tongue

Obstructive sleep apnea (OSA) is often present in kids with Down syndrome due to low muscle tone and craniofacial features, such as a smaller upper airway or larger tongue, that make it more challenging to maintain an open airway during sleep. For many patients, the first-line treatment — continuous positive airway pressure (CPAP) — is not always effective or tolerable, with long-term adherence rates below 50%. However, there’s new hope on the horizon.   

Pediatric otolaryngologist Norman Friedman, MD, of Children’s Hospital Colorado, highlights a breakthrough treatment for OSA in patients with Down syndrome, which is known as upper airway stimulation. This treatment employs an implantable nerve stimulant, which is implanted under the skin of the neck and chest and works much like a pacemaker for the tongue. When activated, the device stimulates the tongue to move forward, opening the airway to allow oxygen to flow naturally and facilitating breathing.   

Recently, the U.S. Food and Drug Administration extended approval for the device to include children with Down syndrome aged 13 and older. The safety and efficacy of the device was evaluated in the STAR clinical trial, which showed significant reductions in sleep apnea events and improvements in quality of life.    

While only a handful of children’s hospitals currently offer this treatment, Dr. Friedman plans to expand the sleep program at Children’s Colorado to treat patients with Down syndrome and evaluate children who still have persistent OSA after undergoing a tonsillectomy.  

The device offers a new, innovative approach to effectively managing OSA in young patients, especially those who are not candidates for or cannot adhere to CPAP therapy. It represents a key advancement in sleep apnea treatment and has the potential to improve the lives of patients who previously had limited options.  

“This therapy is setting new standards in OSA treatment here at Children’s Colorado and beyond,” Dr. Friedman says. “We look forward to expanding this treatment to our teens with Down syndrome, as well as the broader pediatric population.”