Children’s Hospital Los Angeles and Ann & Robert H. Lurie Children’s Hospital of Chicago are offering the Inspire hypoglossal nerve stimulation device to adolescents with Down syndrome who suffer from obstructive sleep apnea, providing an alternative for patients who cannot tolerate continuous positive airway pressure (CPAP) machines or whose condition persists after tonsil removal.
Anatomical Factors Drive Sleep Apnea in Children
Between 50% and 80% of children with Down syndrome experience obstructive sleep apnea, driven by anatomical factors such as a smaller airway, reduced muscle tone, and a larger tongue that blocks breathing during sleep. When left untreated, the condition contributes to fatigue, behavioral challenges, and long-term health risks including stroke, heart disease, and dementia, as pulmonologist Dr. Sally Ward noted. While surgical removal of adenoid and tonsillar tissue helps some patients, approximately half of individuals with Down syndrome struggle to tolerate CPAP therapy or use it consistently.
To address this gap, institutions like Children’s Hospital Los Angeles have made the Inspire device available since July 2025, following otolaryngologist Dr. Debra Don and Dr. Ward establishing their clinical pathway. The Food and Drug Administration approved the hypoglossal nerve stimulator for patients aged 13 to 18 with Down syndrome who meet specific weight requirements and present an apnea-hypopnea index between 10 and 50, according to data detailed by Ann & Robert H. Lurie Children’s Hospital of Chicago. Candidates must also undergo sleep endoscopies and studies to verify anatomical suitability.
Surgical Procedure Implants Device to Control Tongue Movement
The surgical procedure to implant the Inspire device takes roughly three hours. Dr. Don explained that a small battery or generator is placed in the chest, while a cuff-shaped electrode is positioned around the hypoglossal nerve in the neck, which controls tongue movement. Patients typically return home the day after the operation.
Six weeks post-implantation, clinicians activate the system during a follow-up visit. Families receive a handheld remote to turn the device on at bedtime and deactivate it in the morning. During sleep, the device senses breathing patterns and delivers mild electrical pulses to the hypoglossal nerve, moving the tongue forward and opening the palate without waking the patient. The system automatically shuts off after 10 hours of use to prevent daytime activation, and the internal battery lasts between 10 and 11 years before requiring a minor replacement procedure.
Implanted Device Reduces Sleep Apnea Events in Adolescents
- How it works: The implanted device monitors breathing overnight and sends a gentle electrical signal to the nerve controlling the tongue, keeping the airway open.
- Who qualifies: Adolescents aged 13 and older with Down syndrome who still experience severe sleep apnea after a tonsillectomy and cannot tolerate a CPAP mask.
- Expected outcome: The device can decrease breathing-related sleep events by 50% to 70%, offering an alternative for families struggling with mask compliance.
Patient Requirements and When to Seek Medical Advice
The Inspire device is not appropriate for every patient. Individuals who cannot tolerate the initial sleep endoscopies and diagnostic studies required for surgical mapping are excluded from candidacy. Patients must also meet specific weight requirements and fall within the approved age and apnea-hypopnea index parameters.
Families should consult a pediatric otolaryngologist or pulmonologist if an adolescent with Down syndrome exhibits persistent snoring, restless sleep, daytime fatigue, or behavioral difficulties. Because untreated sleep apnea carries severe long-term cardiovascular and neurological risks, early evaluation by specialized centers—such as the Complex Sleep Program at Lurie Children’s, directed by Dr. Saied Ghadersohi, or the joint otolaryngology and pulmonology teams at Children’s Hospital Los Angeles—is critical for determining eligibility.
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