Published onHI Hope
An infant with hyperinsulinism (HI) and Beckwith-Wiedemann syndrome (BWS) faces unique challenges with oral feeding. Many of these children may need their hypoglycemia managed with a continuous infusion of dextrose (sugar water) via a feeding tube, or at least frequent feedings. These interventions may have a negative impact on the infant’s drive and interest in feeding. They may also result in negative responses to oral feeding, such as retching, gagging and refusal. Some babies are sensitive to oral stimulation and may refuse a pacifier or show discomfort when their face or lips are touched.
On top of the challenges HI presents, the BWS diagnosis may also impact oral feeding progression. Children with BWS often have a large tongue, or macroglossia, which may impact successful oral feeding. In severe cases, macroglossia can obstruct the infant’s airway, compromising the coordination of breathing and swallowing. An oral feeding evaluation and treatment by a speech-language pathologist can provide important information and strategies to overcome some of these difficulties.
In all cases, the focus should be to support the child’s oral feeding development and minimize any negative responses to feeding. Following the infant’s cues for interest in oral stimulation and feeding are just as important as following cues for disinterest. Doing so helps to put the child on the right path toward a lifetime of positive oral feeding.