Abstract

This study examined the early breastfeeding experiences of mothers with an FMR1 premutation (FXPM) and their infants with and without fragile X syndrome (FXS) to identify early feeding needs and potential opportunities for intervention. Data collection occurred through a retrospective national survey that captured data on breastfeeding experiences and co-occurring conditions of mother and child. Participants were 246 mothers with an FXPM. Of their 384 infants, 287 had FXS and 97 were unaffected (i.e., they did not have FXS or an FXPM). Unaffected infants had a longer breastfeeding duration relative to infants with FXS, and infants of mothers who had postpartum depression (PPD). Additionally, infants who were reported to display aggressiveness towards others later in childhood had a shorter breastfeeding duration than those who did not go on to display aggression. Approximately 42% percent of mothers reported difficulties with breastfeeding infants with FXS compared to only 17% of unaffected infants. The most common reason for breastfeeding cessation for mothers of children with FXS was perceived difficulties in breastfeeding for the child (37%), whereas the most common reason for mothers of unaffected infants was a personal choice to stop (37%). This study provides preliminary evidence that infants with FXS show early phenotypes that make breastfeeding more difficult. Future research should investigate whether interventions for infants with FXS could improve breastfeeding outcomes.

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