The objectives of this study were to determine if any specific clinical signs, symptoms, or comorbidities could reliably predict underlying feeding difficulty and need for further evaluation (i.e., video swallow study, VSS) in infants with Down syndrome, to establish the prevalence of gastrostomy tube placement (G-tube), and to determine if any clinical signs, symptoms, or comorbidities correlated with a higher risk for needing placement of a G-tube. An electronic medical record retrospective chart review of 73 children with Down syndrome born between January 2013 and March 2017 and seen in Nationwide Children's Hospital's multidisciplinary Down Syndrome Clinic included demographic information, medical history, and results of studies and specialist evaluations. Descriptive statistics were utilized to summarize the data. Comparisons were performed to identify factors which differed between feeding difficulty vs. no feeding difficulty and G-tube placement vs. no G-tube placement. "Feeding difficulty" was the only feeding term established by the AAP guidelines which was consistently noted in charts of children with feeding abnormalities. Infants with feeding difficulty had increased use of medical services and more abnormalities on specialist evaluations and studies. Congenital heart disease, cardiothoracic surgery, obstructive sleep apnea, and hypothyroidism did not differ significantly between the groups assessed. Our cohort had a prevalence of 13.7% for requiring G-tube placement in their first year of life.Conclusion: The currently established clinical tools for determining which patients may benefit from radiographic evaluation lack sufficient sensitivity to detect all individuals with feeding difficulty. Due to the high prevalence of abnormal VSS results and high rate of G-tube placement, universal radiographic screening for individuals with Down syndrome could be considered, even in the absence of obvious clinical signs or symptoms. However, determining how to balance this with cost, availability, and radiation exposure may be difficult.What is Known: • Feeding difficulty in children with Down syndrome can lead to significantly increased morbidity, such as poor weight gain, failure to thrive, aspiration, persistent respiratory symptoms, andrecurrent pneumonia. • The AAP has established a clinical tool regarding which objective signs and symptoms should lead to a radiographic swallowing assessment within their Health Supervision for Children with Down Syndrome Clinical Report.What is New: • A comprehensive assessment of clinical signs, symptoms, and common comorbidities in infants with Down syndrome has not previously been correlated with presence of feeding difficulty nor necessity for gastrostomy tube placement, including whether or not the terms used in the AAP guidelines encompass the sensitivity required to detect all infants with feeding difficulty. • The prevalence of gastrostomy tube placement in children with Down syndrome has not previously been established.
Keywords: Aspiration; Congenital heart defect; Deglutition; Deglutition disorders; Failure to thrive; Hypothyroidism; Obstructive sleep apnea; Respiratory difficulties; Trisomy 21; Video swallow study.