Parents’ narratives about their experiences of their child’s reconstructive genital surgeries for ambiguous genitalia

Abstract

Aim.  The aim of this study was to initiate an exploration of parents’ understanding and experiences of their child’s reconstructive genital surgeries for ambiguous genitalia.

Background.  The determination of gender for a child born with ambiguous genitalia is a complex medical and social process influenced by biological, psychological, social and cultural factors. Two main approaches exist; one promotes interventions (optimal gender policy) while the other suggests delaying interventions (informed consent policy) until the child can contribute to the decision.

Methods.  An exploratory narrative inquiry design was chosen. Data were collected through narrative interviews with a purposive non-random sample of 10 parents of eight children (aged 0–11 years) who had ambiguous genitalia.

Results.  Parents’ stories reflected strong protective instincts towards their children along with feelings of shock and disbelief. Parents’ social construction of gender influenced their attitudes and beliefs about their child’s ambiguous genitalia and the need for surgery. Parents’ desired to be ‘good parents’ and do what they perceived as ‘right’ for their child. They considered genital surgery as a necessity primarily relying on medical advice to guide them at times of uncertainty and confusion. Parents rarely shared stories about their child’s surgeries/genitalia outside of the couple relationship and these stories were often referred to as ‘secrets’.

Conclusion.  Having a child with ambiguous genitalia was perceived as problematic and brought about changes in roles, responsibilities, goals and social status as a parent beyond those usually associated with parenthood.

Relevance to clinical practice.  These early findings help increase awareness of parents’ experiences and of the problems and emotional challenges that parents face when their child is born with genital ambiguity.