Early Oral Sensory Experiences and Feeding Development in Children with CHARGE Syndrome: A Report of Five Cases

Abstract

Children with CHARGE syndrome commonly experience feeding and swallowing problems. Difficulties may be associated with congenital structural anomalies, motor impairment, and/or oral sensory impairment. For many children with CHARGE syndrome, the introduction of functional oral feeding is delayed and there are often long-term feeding complications. Oral aversion or defensiveness is a frequent serious issue; however, it is uncertain whether this is a primary sensory disorder or secondary to delayed and/or negative oral sensory and feeding experiences. This article examines in detail the early oral sensory and feeding experiences of five children with CHARGE syndrome, through a review of medical records and caregiver questionnaires. Findings indicate variable early oral sensory experiences in this group of children, with all of the children having some difficulty or delay in the development of oral feeding and swallowing. The nature of these difficulties and the potential contributory factors are discussed.

CHARGE syndrome: an update

“…46 Postnatal growth retardation should be in relation to feeding difficulties and/or surgical problems. 47 Growth tends to catch up after infancy, but insufficient and inadapted intakes may have adverse outcome on growth and bone mineralization. Osteoporosis seems frequent in elder patients with CHARGE, because of 'relative' malnutrition and insufficient secretion of steroids.…”

Reply to letter to the editor by Lowry et al.: An epidemiological analysis of CHARGE syndrome: Preliminary results from a Canadian study [Issekutz et al., 2005]

“…We feel strongly that the incidence of CHARGE syndrome is more in keeping with our Atlantic province data (1:8,500 live births) than the figure from Dr. Lowry's team through the Alberta birth defect surveillance (1:51,000). As Dr. Lowry acknowledges, we have great interest and experience in CHARGE syndrome from many research perspectives [Dobbelsteyn et al, 2005;Doyle and Blake, 2005;Searle et al, 2005;Smith et al, 2005], including gene testing in the near future. This creates a situation of identifying an affected population that may not have been diagnosed with CHARGE in their early years because the classical features were either not present or subtle.…”

Gastrointestinal and feeding difficulties in CHARGE syndrome: A review from head‐to‐toe

“…They can both disrupt respiration during sucking, and are often a major problem at birth, interfering with an infant's ability to feed (Dobbelsteyn et al, 2005). A CT scan or nasal endoscopy is often Individuals often have a small mouth and enlarged tongue, leading to a crowded oral cavity (Sanlaville & Verloes, 2007).…”

“…Parents have identified abdominal massage as an effective method to provide relief to abdominal pain (Dobbelsteyn et al, 2005). Treatment options identified for Irritable Bowel Syndrome (IBS), such as following the low FODMAP (fermentable oligosaccharides, disaccharides, monosaccharides, and polyols) diet and taking probiotics, may help provide symptomatic relief in individuals with CHARGE syndrome as well.…”

“…One study that examined the healthcare needs of individuals with CHARGE syndrome in the UK found that in just the first year of life, GI symptoms contributed to extended hospitalizations (26-230 days), 10-34 diagnostic procedures, and a trial of 10-28 prescribed medications (Anderzén-Carlsson, 2015). Although previously thought to be most highly prevalent in infancy and childhood, we have continued to learn more about the impact of existing and the development of new feeding and GI issues well into adolescence and adulthood (Bergman et al, 2010;Blake, Salem-Hartshorne, Daoud, & Gradstein, 2005;Dobbelsteyn, Marche, Blake, & Rashid, 2005;Dobbelsteyn et al, 2008;Hartshorne et al, 2016).…”