The Work of Managing Phenylketonuria and Breastfeeding

Purpose: To describe the demands of breastfeeding in the context of Phenylketonuria (PKU) and mothers' efforts to manage the complicated feeding regimen. Design and Methods: A qualitative design and methods were used to interview mothers (n=10) who had previously completed an online international survey about their feeding experiences with their infants with PKU. Mothers were recruited to participate in in-depth telephone interviews to further explore their breastfeeding experiences of their infants with PKU. Mothers were eligible for participating in the study if they were 21 years of age or older, had initiated breastfeeding an infant with PKU, and the infant was less than three years of age. There were no restrictions on the length of time mothers' breastfed. Results: The work of adapting breastfeeding to maintain phenylalanine levels was the central theme of the breastfeeding experience. Mothers described two major components of the work and effort needed to breastfeed infants with PKU: maintaining phenylalanine levels and adapting breastfeeding. Practice Implications: Mothers used various strategies to sustain breastfeeding while adhering to the PKU management plan in order to successfully manage their infants' PKU and breastfeeding.