Children with CHARGE syndrome frequently experience long-term and complex feeding difficulties. This study investigated the
prevalence and nature of feeding difficulties in a population of 39 children with CHARGE syndrome and explored the relationship
between the clinical characteristics of the syndrome and feeding development. Information was collected via a survey (two
questionnaires) completed by the parents. One questionnaire, the Pediatric Assessment Scale for Severe Feeding Problems, provided
an objective measure of the current severity of feeding difficulties. Results of the survey indicated a high prevalence of
long-term feeding issues in this population. Approximately 90% of the children had received tube feeding at some point in
time. In contrast to previous literature, choanal atresia and heart malformations were not found to be significantly related
to a higher severity of feeding difficulty or associated with long-term tube feeding. Cranial nerve dysfunction was found
to be the primary clinical feature of CHARGE syndrome impacting feeding development, reflected in a high prevalence of weak
sucking/chewing, swallowing difficulty, gastroesophageal reflux, and aspiration. The presence of these conditions in infancy
suggests the likelihood of long-term feeding difficulty and warrants the ongoing attention of feeding specialists.
Keywords CHARGE syndrome - Feeding difficulties - Children - Cranial nerves - Deglutition - Deglutition disorders
This research was conducted at Dalhousie University in collaboration with the Izaak Walton Killam (IWK) Health Centre.