From
StayCurrentMD
QUAD #23: CHARGE Syndrome, Airway Considerations with Dr. Catherine Hart
With CCHMC Pediatric Surgery · hosted by Dr. M. Goti
Part of
CHARGE Syndrome 5 items
Chapter 1 of 6 · Fundamentals
Introduction
Introduction to CHARGE Syndrome Airway Discussion
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Educational content from recorded physician discussions — not medical advice. Talk to your (or your child's) care team about your situation.
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What the experts said
CHARGE syndrome patients tend to have big bulkier arytenoids positioned more anteriorly, creating a structural difference rather than dynamic obstruction typical of congenital laryngomalacia.
The vocal folds in CHARGE larynx appear foreshortened but are not actually shorter; less is visible due to anterior positioning of the arytenoids.
At least 90% of kids with CHARGE syndrome have some degree of cranial nerve abnormalities, which can greatly impact their swallow function.
Aspiration is present in about 60% of kids with CHARGE syndrome.
Kids with CHARGE syndrome are just as likely to aspirate saliva and reflux as they are to aspirate oral feeds.
Glycopyrrolate when first started in a patient is typically 95% effective, but you have to increase the dose to maintain that efficacy and the side effects often lead to discontinuation at higher doses.
According to Dr. Hart, glycopyrrolate can make secretions really thick, which in kids who already have issues with airway clearance can significantly worsen the problem.
Scopolamine can be very effective for sialorrhea but makes kids very drowsy and can make them unable to accommodate, which is problematic in CHARGE patients with complex vestibular issues.
In a study of just under 100 kids, Botox was effective in about two-thirds of them and had no impact on about the other third, with effects lasting on average about four months.
Salivary duct relocation is not appropriate for kids who are aspirating because it does not decrease saliva production, only relocates where it drains into the mouth.
Four-duct ligation only ends up with a 30% long-term satisfaction rate.
The drool procedure (bilateral parotid duct ligation and bilateral submandibular gland excision) is almost 90% successful.
Tracheotomy is thought to be necessary in probably about a third of all kids with CHARGE syndrome, usually for multifactorial reasons.
A cuffed tracheostomy tube is not protective from aspiration because the cuff has to be deflated and secretions can still make it down into the airway.
Laryngotracheal separation renders children unable to talk, and according to Dr. Hart, is typically only offered to children who are already non-verbal or neurologically impaired and only when there is extreme impact on the lungs.