September 2012

Document Type


Degree Name



Oregon Health & Science University


Background: Breastfeeding an infant with phenylketonuria (PKU) is possible, but requires mastering a complex management routine that combines limited breastfeeding with phenylalanine-free formula to maintain therapeutic phenylalanine levels and reflects mothers’ efforts to continue breastfeeding in this challenging situation. Purpose: This study described the prevalence and duration of breastfeeding infants with PKU in the United States and Canada, and described mothers’ experiences breastfeeding in the context of PKU. Methods: This was a cross-sectional descriptive study. Although this study was based at Oregon Health & Science University, mothers were recruited from across the United States and Canada. In phase 1, mothers (n = 103) with one child with PKU completed the online survey between November, 2010 and May, 2011. The online survey consisted of a questionnaire that contained sections about the demographic characteristics of mothers and infants, and infant feeding history. R




School of Nursing



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