Breastfeeding Infants with Phenylketonuria in the United States and Canada

Abstract

Objective: This study described the prevalence and duration of mothers' breastfeeding infants with phenylketonuria (PKU) and explored factors related to duration of breastfeeding as a surrogate for breastfeeding success. Subjects and Methods: Descriptive analysis as performed from an international Internet survey of mothers (n = 103) who met the inclusion criteria: (1) at least 21 years of age, (2) able to read and write in English, (3) child with PKU, and (4) living in the United States or Canada. Results: Of the 103 mothers, 89 (86%) initiated breastfeeding immediately following delivery, whereas 14 (14%) chose bottle feeding. In comparison to breastfeeding after delivery, significantly fewer mothers breastfed after diagnosis (McNemar's v 2 = 30.33, p < 0.001; n = 72 vs. n = 89). Breastfeeding duration ranged from less than 1 month to 24 months with one modal duration category (n = 20, 22%) at less than 1 month. The timing of the addition of commercial infant formula to supplement breastfeeding or expressed mothers' milk was associated with a shorter duration of breastfeeding among infants with PKU: v 2 (42, n = 73) = 88.13, p < 0.001. Conclusions: PKU is treated with phenylalanine (Phe) restriction. Breastfeeding infants with PKU is challenging in part because Phe intake is difficult to determine precisely. We studied breastfeeding duration in infants with PKU and factors associated with success. Further research should identify the unique needs of mothers' breastfeeding infants with PKU to guide the development of interventions specific to these mothers to support their efforts to continue breastfeeding after the diagnosis of PKU.

Commitment to Breastfeeding in the Context of Phenylketonuria

“…Initially 89 mothers breastfed, but after the diagnosis, only 72 mothers continued to breastfeed. This decrease was significant (McNemar's χ 2 = 30.333, p < .001; n = 72 vs. n = 89) (Banta‐Wright et al., ).…”

“…Although many mothers successfully continue to breastfeed, many mothers decide not to continue to breastfeed after the diagnosis of PKU (Banta-Wright, Press, Knafl, Steiner, & Houck, 2014). In addition, investigators have consistently reported that few mothers of infants with PKU persist in breastfeeding beyond an initial period and breastfeed for a shorter duration than mothers of other healthy term infants (Agostoni, Verduci, Fiori, Riva, & Giovannini, 2000;Banta-Wright et al, 2014;Banta-Wright, Shelton, Lowe, Knafl, & Houck, Breastfeeding infants with phenylketonuria is challenging in part because it is virtually impossible to precisely determine phenylalanine intake. Cornejo et al, 2003;Demirkol et al, 2001;Huner & Demirkol, 1996;Kanufre et al, 2007;Motzfeldt et al, 1999;Segev, Abraham, Anikster, & Schwartz, 2004;van Rijn et al, 2003).…”

Challenges to Breastfeeding Infants With Phenylketonuria

“…Respondents in this analysis also were participants in the larger study examining the prevalence and duration of breastfeeding infants with PKU (Banta-Wright et al, 2014). Demographic characteristics of the mothers and infants in this report are presented in Tables 1 and 2 respectively.…”

“…Similarly, a Brazilian study reported that slightly more than half of the mothers were breastfeeding their infants with PKU at 6 months and by 12 months less than a third continued to breastfeed (Kanufre et al, 2007). In a more recent study involving mothers from the United States and Canada, the prevalence of breastfeeding infants with PKU before and after diagnosis revealed that significantly few mothers continued to breastfeed after diagnosis (Banta-Wright et al, 2014). Overall, the incidence, prevalence, and duration of breastfeeding when infants have PKU continue to be less than when full-term infants do not have PKU (Agostoni et al, 2000;Banta-Wright et al, 2014;Kanufre et al, 2007;Motzfeldt et al, 1999;Segev et al, 2004).…”

“…In a more recent study involving mothers from the United States and Canada, the prevalence of breastfeeding infants with PKU before and after diagnosis revealed that significantly few mothers continued to breastfeed after diagnosis (Banta-Wright et al, 2014). Overall, the incidence, prevalence, and duration of breastfeeding when infants have PKU continue to be less than when full-term infants do not have PKU (Agostoni et al, 2000;Banta-Wright et al, 2014;Kanufre et al, 2007;Motzfeldt et al, 1999;Segev et al, 2004). In addition, qualitative analysis of mothers' experiences breastfeeding infants with PKU revealed that breastfeeding an infant with PKU is more work than breastfeeding a healthy term infant who does not have PKU (Banta-Wright, Houck, Kodadek, Steiner, & Knafl, in review).…”