Seeking Advice on Management Options for Pediatric Midfacial Abnormali

Hello everyone,

I’m seeking advice and shared experiences regarding my four-year-old child, who was born with midfacial abnormalities resulting in a retruded midface and a small upper airway. This has led to collapse of the nasopharyngeal airway during sleep and severe obstructive sleep apnea.

Our doctor has already performed tonsillectomy and adenoidectomy and attempted nasal dilation to increase airway size. However, the airway remains narrow, and a floppy nasopharyngeal region continues to collapse during sleep. CPAP and BiPAP have not been effective.

At the moment, the recommended option is to maintain a tracheostomy at night to ensure adequate breathing. According to the medical team, the only potential long-term corrective treatment may be midface advancement surgery, which is typically considered around the age of nine.

I would greatly appreciate hearing from anyone who has experience with similar cases or knows of alternative treatment options or supportive therapies that might help manage or improve this condition in the meantime.

Thank you very much for your time and insights.

Best regards,