Breastfeeding the Infant with PKU

Abstract

Breastfeeding is possible with children who have phenylketonuria. Based on the decisions made by the breastfeeding mother and the infant's physician, there are multiple methods of management which can be utilized to provide breast milk for the infant with PKU. This article describes some of the methods that have been used to manage the treatment of phenylketonuria when a mother chooses to breastfeed.

Maternal Phenylketonuria: A New Cause for Concern

“…Screening that is conducted during this time can result in a false-negative test and places the newborn in jeopardy of becoming severely impaired. Any child who is screened before 24 hours of age should have a repeat screen performed at 1 to 2 weeks of age (Duncan & Elder 1997). Screening needs to be conducted within the first 20 days of life to prevent adverse effects of the disease (Working Party on Phenylketonuria, 1993b).…”

“…Breast milk, which contains approximately 40 mg/dl of phenylalanine, has a lower phenylalanine concentration than most infant formulas, which contain 70-85 mg/dl of phenylalanine. Therefore, infants may ingest a greater amount of breast milk and remain within the recommended phenylalanine limit (Duncan & Elder, 1997). Although the phenylalanine concentration in breast milk is lower than that found in infant formula, the amount of breast milk ingested is monitored to prevent phenylalanine levels from becoming too high.…”

“…Weighing the infant before and after breastfeeding, then supplementing the feedings with a phenylalanine-free metabolic formula that provides proteins and other nutrients is one method that breastfeeding mothers may consider. An alternative method that involves having the mother pump her breasts regularly and then bottlefeed the infant with measured amounts of breast milk and metabolic formula may be used and is a more accurate means of calculating the infant's intake (Duncan & Elder, 1997). Although these methods will allow the mother to breastfeed her infant as desired, they are not without drawbacks.…”

“…Although these methods will allow the mother to breastfeed her infant as desired, they are not without drawbacks. Difficulty in maintaining the mother's milk supply through prolonged use of a breast pump and the tedious task of frequently weighing the infant throughout the breastfeeding period may be cumbersome and frustrating to mothers (Duncan & Elder, 1997). Additional problems, such as nipple confusion, changes in feeding patterns, and coping with the stress of having a child with a metabolic disorder, may cause the family to consider an alternative feeding method or to discontinue breastfeeding completely.…”

“…Mothers who are mainly concerned with the nutritional and immunologic benefits of breastfeeding may find that pumping their breasts and bottlefeeding their infants with premeasured amounts of breast milk and formula is the most convenient method. On the other hand, mothers who choose to breastfeed to establish a close relationship with their child may want to weigh their infant before and after each feeding (Duncan & Elder, 1997). Women who wish to breastfeed their infants should consult with their health care providers to select a breastfeeding method that is safe, comfortable, and convenient for the mother and her infant.…”