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Objective: To describe the meaning and importance of breastfeeding to mothers of infants with phenylketonuria (PKU).

Design: Qualitative description.

Setting: Mothers from the United States and Canada were recruited from the PKU Listserv and interviewed by telephone.

Participants: Ten breastfeeding mothers with infants who had PKU and were younger than age 36 months.

Methods: Mothers’ thoughts, decisions, and experiences of breastfeeding their infants with PKU were collected through telephone interviews. Interviews were transcribed verbatim, and data were analyzed using thematic descriptive analysis in the context of PKU.

Results: Participants felt that that breastfeeding an infant with PKU was the healthiest choice and was therefore worth the labor. These women believed that this was what a loving mother would choose. As they continued to breastfeed their infants after diagnosis, the views of the participants changed. Initially they saw PKU as a disorder and felt that their infants were ill; later they felt that their infants were healthy in spite of PKU. Normal could mean a breastfeeding infant with PKU.

Conclusion: Findings demonstrate the importance mothers attribute to breastfeeding and their willingness to invest considerable effort to breastfeed. Health care providers working with these mothers should help them strategize for success.


Originally published in Journal of Obstetric Gynecologic, and Neonatal Nursing, 44, 726-736; 2015. DOI: 10.1111/1552-6909.12750