For parents, caregivers, health care providers, and teachers, concerns and questions often arise regarding the care and well-being of individuals with Cornelia de Lange Syndrome.
From infancy to adulthood, feeding difficulties are very common in individuals with CdLS. Preferably, individuals with CdLS should be fed orally (by mouth). However, feeding difficulties may sometimes result in feeding times becoming unsafe, stressful and taking many hours out of the day. In these circumstances, doctors may temporarily supplement an individual’s feeding with a gastrostomy tube.
Recommendation(s)
Feeding and Dental Difficulties
R12
In every CdLS individual with prolonged and marked feeding difficulties, the multidisciplinary assessment (from healthcare workers across many disciplines) should consider (temporary) placement of a gastrostomy (surgical opening through the abdomen into the stomach) as a supplement to oral feeding.
R13
In individuals with CdLS who have recurrent respiratory infections, reflux and/or aspiration (breathing foreign objects into airways) should be ruled out.
R14
The palate should be closely examined at diagnosis. In case of symptoms of a (submucous) cleft palate, referral for specialist assessment is indicated.
R15
Dental assessment and cleaning should take place regularly; a more thorough dental examination or treatment under anaesthesia may be necessary.
Please take note that the Ask the Expert service is comprised of volunteer professionals in various areas of focus. Answers are not considered a medical, behavioral, or educational consultation. Ask the Expert is not a substitute for the care and attention your child’s personal physician, psychologist, educational consultant, or social worker can deliver.
