Informing the midwife on rare genetic disorders and their effects on mothers breastfeeding – a mixed methods study

Background: An inability to breastfeed is a common source of maternal distress. Genetic disorders can prevent lactation and impair mothers and infants ability to express breastmilk. Aim: The purpose of this paper is to report on the experiences of some mothers attempting to breastfeed when they or their infant have the rare genetic disorder ectodermal dysplasia. Methods: A mixed methods approach identified supportive care needs of parents caring for a child with ectodermal dysplasia. A secondary analysis determined that most mothers responding to an online survey and participating in a focus group held unresolved psychological issues related to their inability to breastfeed. The study received ethical clearance from the University of South Australia human research ethics committee prior to proceeding with data collection. Findings: Mothers in this study expressed frustration with the lack of understanding held by healthcare professionals and the lack of practical support when attempting to establish breastfeeding. Emotional comorbidity was linked to perceived failure to breastfeed. Mothers requested an awareness-raising approach to assist midwives and health professionals identify feeding problems earlier. The importance of active listening to mothers’ concerns and refraining from cursory judgement was identified. Implications: While genetic screening is offered to pregnant women who have a known family history of a genetic disorder, many genetic orders are rare and go undetected. Newly birthed mothers with a genetic disorder may encounter difficulties when attempting to establish breastfeeding. More genetic education is needed to assist midwives in gaining a better understanding of how physiological problems, associated with a genetic disorder, may be a root cause of breastfeeding difficulties