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Feeding difficulties in children with CHARGE syndrome: prevalence, risk factors, and prognosis
Cindy Dobbelsteyn1, Sean D Peacocke, Kim Blake
1School of Human Communication Disorders, Dalhousie University, 5599 Fenwick Street, Halifax, Nova Scotia, Canada B3H 1R2. cindy.dobbelsteyn@dal.ca
Insights
Children with CHARGE syndrome often have feeding problems. Cranial nerve issues, not heart problems, are linked to severe feeding difficulties and tube feeding needs.
Area of Science:
- Pediatric Medicine
- Genetics
- Developmental Biology
Background:
- CHARGE syndrome presents complex feeding challenges in children.
- Long-term feeding difficulties are common, impacting quality of life.
Purpose of the Study:
- To investigate the prevalence and nature of feeding difficulties in children with CHARGE syndrome.
- To explore the relationship between clinical characteristics and feeding development.
Main Methods:
- A survey using two questionnaires, including the Pediatric Assessment Scale for Severe Feeding Problems, was completed by parents of 39 children.
- Data collected focused on feeding difficulties and clinical features of CHARGE syndrome.
Main Results:
- A high prevalence of long-term feeding issues was observed, with approximately 90% requiring tube feeding.
- Cranial nerve dysfunction was identified as the primary factor impacting feeding, leading to issues like weak sucking/chewing, swallowing difficulties, reflux, and aspiration.
- Choanal atresia and heart malformations were not significantly associated with feeding severity or long-term tube feeding.
Conclusions:
- Cranial nerve dysfunction is a key predictor of severe feeding difficulties in CHARGE syndrome.
- Early identification of these dysfunctions is crucial for timely intervention by feeding specialists.
- Findings suggest a need for ongoing specialized feeding support for affected children.
Abstract:
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.
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