Searching for harmony: parents’ narratives about their child’s genital ambiguity and reconstructive genital surgeries in childhood

Abstract

Aim.  This paper is a report of a narrative study of parents’ experiences of their child’s genital ambiguity and the place reconstructive surgeries have in their lives.

Background.  Increasingly, the use of early reconstructive genital surgery has come under criticism. Few studies have explored parents’ inclusion in the surgical decision-making process, their experiences of their child’s surgeries or of parenting a child born with ambiguous genitalia.

Method.  Narrative interviews about parents’ experiences of having and caring for a child of uncertain gender and their rationale for reconstructive surgeries were conducted with 15 parents between October 2004 and February 2006. Interviews were recorded, transcribed verbatim and analysed in a narrative analysis framework.

Results.  Narrative analysis resulted in three increasingly contextual and conceptual levels of stories. Connections between stories gave the basis for the synthesis of the data; interpretation identified three elements of shock, protection and anxiety, which influenced the parents. The parents identified the need for early and ongoing support from healthcare professionals. The parents expected professionals to be knowledgeable about the dilemmas surround disorders of sex development and have experience in managing care for themselves and their child.

Conclusion.  For the parents seeking a sense of harmony between their child’s genital ambiguity and gender during childhood was important. Searching for this harmony became a dynamic and evolving process, which was built on their knowledge and increasing willingness to engage with professionals, negotiate their social worlds, emotional responses and belief systems.