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.
Similar content being viewed by others
References
B Hall (1979) ArticleTitleChoanal atresia and associated multiple anomalies J Pediatr 95 IssueID3 395–398 Occurrence Handle469662
RA Pagan JM Graham SuffixJr J Zonana SL Yong (1981) ArticleTitleColoboma, congenital heart disease, choanal atresia with multiple anomalies: CHARGE association J Pediatr 99 IssueID2 223–227 Occurrence Handle6166737
KD Blake SL Davenport BD Hall MA Hefner RA Pagon MS Williams AE Lin JM Graham (1998) ArticleTitleCHARGE association: An update and review for the primary pediatrician Clin Pediatr 37 159–174
Issekutz KA, Graham JM, Prasad C, Smith IM, Blake KD: An epidemiological analysis of CHARGE syndrome: preliminary results from a Canadian study. Am J Med Genet (accepted August 2004)
Lawland C: CHARGE association/syndrome: looking ahead (Web document). Published by the Canadian Pediatric Surveillance Program (CPSP) 2003 Resources, (cited 11 January 2004). < http://www.cps.ca/english/CPSP/Resources/CHARGE.htm>
AS Harvey PM Leaper A Bankier (1991) ArticleTitleCHARGE association: clinical manifestations and developmental outcome Am J Med Genet 39 IssueID1 48–55 Occurrence Handle10.1002/ajmg.1320390112 Occurrence Handle1867265
MS Abi Daoud J Gradstein KD Blake (2002) ArticleTitleCHARGE into the adolescent and adult decade Pediatr Child Health 7 IssueIDSuppl A 27A
F Raqbi C Le Bihan MP Morisseau–Durand P Dureau S Lyonnet V Abadie (2003) ArticleTitleEarly prognostic factors for intellectual outcome in CHARGE syndrome Dev Med Child Neurol 45 483–488 Occurrence Handle10.1017/S0012162203000896 Occurrence Handle12828403
S Bazyk (1990) ArticleTitleFactors associated with the transition to oral feeding in infants fed by nasogastric tubes Am J Occup Ther 44 IssueID12 1070–1078 Occurrence Handle2126165
KA Burklow AN Phelps JR Schultz K MacConnell C Rudolph (1998) ArticleTitleClassifying complex pediatric feeding disorders J Pediatr Gastroenterol Nutr 27 IssueID2 143–147 Occurrence Handle10.1097/00005176-199808000-00003 Occurrence Handle9702643
AL Tellier V Cormier–Daire V Abadie J Amiel D Bonnet et al. (1998) ArticleTitle CHARGE syndrome: report of 47 cases and review Am J Med Genet 76 402–409 Occurrence Handle10.1002/(SICI)1096-8628(19980413)76:5<402::AID-AJMG7>3.0.CO;2-O Occurrence Handle9556299
G Roger M-P Morisseau–Durand T Abbeele ParticleVan Den R Nicollas J-M Triglia P Narcy V Abadie Y Manac’h E-N Garabedian (1999) ArticleTitleThe CHARGE association: the role of tracheotomy Otolaryngol Head Neck Surg 125 IssueID1 33–38
AE Lin JR Siebert JM Graham SuffixJr (1990) ArticleTitleCentral nervous system malformations in the CHARGE association Am J Med Genet 37 304–310 Occurrence Handle10.1002/ajmg.1320370303 Occurrence Handle2260555
KD Blake IM Russell–Eggitt DW Morgan JM Ratcliffe RK Wyse (1990) ArticleTitleWho’s in CHARGE? Multidisciplinary management of patients with CHARGE association Arch Dis Child 65 217–223 Occurrence Handle2317068
CMD Lawland KD Blake C Prasad JM Graham SuffixJr (2003) ArticleTitleThe cranial nerve anomalies of CHARGE association/syndrome (A/S) Pediatr Child Health 8 IssueIDSuppl B 26B, 2003
RN Ichord (1994) Neurology of swallowing disorders. DN Tuchman RS Walter (Eds) Disorders of feeding and swallowing in infants and children Singular San Diego 37–52
JC Arvedson L Brodsky (2002) Pediatric swallowing and feeding: Assessment and management EditionNumber2 Singular Publishing New York
LS Wolf RP Glass (1992) Feeding and swallowing disorders in infancy: Assessment and management Therapy Skill Builders San Antonio, TX
A Staiano (2003) ArticleTitleFood refusal in toddlers with chronic diseases J Pediatr Gastroenterol Nutr 37 225–227 Occurrence Handle12960640
SE Morris MD Klein (2001) Pre-feeding skills: a comprehensive resource for feeding development Therapy Skill Builders San Antonio, TX
S Strudwick (2003) ArticleTitleGastro-oesophageal reflux and feeding: the speech and language therapist’s perspective Int J Pediatr Otorhinolaryngol 67S1 S101–S102 Occurrence Handle10.1016/j.ijporl.2003.08.039
D Field M Garland K Williams (2003) ArticleTitleCorrelates of specific childhood feeding problems J Pediatr Child Health 39 299–304 Occurrence Handle10.1046/j.1440-1754.2003.00151.x
LA Newman (2000) ArticleTitleOptimal care patterns in pediatric dysphagia Semin Speech Lang 21 IssueID4 281–291 Occurrence Handle10.1055/s-2000-8382 Occurrence Handle11085253
RL Babbitt TA Hoch DA Coe (1994) Behavioral feeding disorders. DN Tuchman RS Walter (Eds) Disorders of feeding and swallowing in infants and children Singular San Diego 77–95
R Mannikam JA Perman (2000) ArticleTitlePediatric feeding disorders J Clin Gastroenterol 30 IssueID1 34–46 Occurrence Handle10.1097/00004836-200001000-00007 Occurrence Handle10636208
CD Rudolph DT Link (2002) ArticleTitleFeeding disorders in infants and children Pediatr Clin North Am 49 IssueID1 97–112 Occurrence Handle10.1016/S0031-3955(03)00110-X Occurrence Handle11826810
RS Illingworth MB Lister (1964) ArticleTitleThe critical or sensitive period, with special references to certain feeding problems in infants and children J Pediatr 65 839–848 Occurrence Handle14244090
K Northstone P Emmett F Nethersole InstitutionalAuthorNamethe ALSPAC Study Team: (2001) ArticleTitleThe effect of age of introduction to lumpy solids on foods eaten and reported feeding difficulties at 6 and 15 months J Hum Nutr Dietet 14 43–54 Occurrence Handle10.1046/j.1365-277X.2001.00264.x
PS Eicher DM McDonald–McGinn CA Fox DA Driscoll BS Emanuel EH Zackai (2000) ArticleTitleDysphagia in children with 22q11.2 deletion: unusual pattern found on modified barium swallow J Pediatr 137 IssueID2 158–165 Occurrence Handle10.1067/mpd.2000.105356 Occurrence Handle10931405
N Rommel A-M DeMeyer L Feenstra G Veerman–Wauters (2003) ArticleTitleThe complexity of feeding problems in 700 infants and young children presenting to a tertiary care institution J Pediatr Gastroenterol Nutr 37 75–84 Occurrence Handle10.1097/00005176-200307000-00014 Occurrence Handle12827010
KD Blake D Brown (1993) ArticleTitleCHARGE association looking at the future—the voice of a family support group Child Care Health Dev 19 395–409 Occurrence Handle9098398
TZ Zangen C Ciarla S Zangen C Di Lorenzo AF Flores et al. (2003) ArticleTitle Gastrointestinal motility and sensory abnormalities may contribute to food refusal in medically fragile toddlers J Pediatr Gastroenterol Nutr 37 287–293 Occurrence Handle12960651
MM Palmer (1998) ArticleTitleWeaning from gastrostomy tube feeding: commentary on oral aversion Pediatr Nurs 25 IssueID5 475–478
PH Casey (1983) ArticleTitleFailure to thrive: a reconceptualization Dev Behav Pediatr 4 IssueID1 63–66
ME Kerwin (1999) ArticleTitleEmpirically supported treatments in pediatric psychology: severe feeding problems J Pediatr Psychol 24 IssueID3 293–314 Occurrence Handle10.1093/jpepsy/24.3.193
KG Byars KA Burklow K Ferguson T O’Flaherty K Santoro et al. (2003) ArticleTitleA multicomponent behavioral program for oral aversion in children dependent on gastrostomy feedings J Pediatr Gastroenterol Nutr 37 473–480 Occurrence Handle14508219
Abadie V: Swallowing and Feeding in CHARGE syndrome, Paper presented at the 4th International CHARGE Syndrome Conference. Houston, TX, 1999
Morris SE: Children with feeding tubes. Part 3: Making the transition to oral feeding. (Web document). Published by New Visions, 2000 (accessed 10 June, 2004). < http://www. new-vis.com/fym/papers/p-feed 15.htm>
Acknowledgments
The authors would like to thank the caregivers of the children in our study for their time and effort in participating in this study.
Author information
Authors and Affiliations
Corresponding author
Additional information
This research was conducted at Dalhousie University in collaboration with the Izaak Walton Killam (IWK) Health Centre.
Rights and permissions
About this article
Cite this article
Dobbelsteyn, C., Marche, D.M., Blake, K. et al. Early Oral Sensory Experiences and Feeding Development in Children with CHARGE Syndrome: A Report of Five Cases. Dysphagia 20, 89–100 (2005). https://doi.org/10.1007/s00455-004-0026-1
Issue Date:
DOI: https://doi.org/10.1007/s00455-004-0026-1