Zion, of Harrington, Del., is a very loving 9-year-old with Down syndrome. She adores bowling, her Wii U, and her six stuffed animals who absolutely must sleep with her every night. Since birth, Zion has dealt with congestion — stuffy nose, ear infections, sinus infections, even snoring — all not surprising since ear, nose and throat (ENT) problems are common in people with Down syndrome. Although medications helped, it was clear they weren’t enough. Between 1 and 2 years old, Zion had surgeries to insert ear tubes as well as remove her tonsils and adenoids. Those procedures definitely helped — Zion’s ear infections cleared up and her sinus infections became seasonal rather than perpetual.
But as Zion got older, her mom noticed she was always waking up saying she was tired. A diagnostic procedure called a “drug-induced sleep endoscopy” (DISE) revealed that Zion wasn’t getting enough air as she slept, which was causing severe sleep apnea (making her stop breathing during sleep). Despite the fact that Zion had already undergone a tonsillectomy and adenoidectomy, there was now another option — “transoral robotic surgery” (TORS). This operation uses the latest robotic surgical technologies to remove the lingual tonsils (located at the back of the tongue’s base — they’re not the same as what we traditionally call “tonsils”).