Navigating fertility and family planning decisions: Experiences of women with vascular anomalies

Adults with rare vascular anomalies (VAs) face many care and communication challenges since multidisciplinary VA care is primarily available in pediatric hospitals. Previous research has found that patients with VAs have uncertainty about sexual and reproductive health, but their reproductive care and communication experiences have not been well documented. The goal of this study was to explore the fertility and family planning experiences of women with VAs.

Guided by uncertainty management theory, we conducted semi-structured interviews with 12 women with complex VAs. We analyzed the data using thematic analysis.

The participants' experiences were characterized by seven key themes: timing of reproductive conversations, decision-making factors, seeking information, clinician knowledge and willingness, navigating bias and stigma, self-advocacy, and psychosocial well-being and coping.

Our analysis confirmed the unmet information needs women with VAs have regarding topics such as pregnancy and fertility. Many women faced a dilemma choosing between VA treatment or becoming a parent. The women shared many challenges navigating decision uncertainty and dilemmas including poor communication with clinicians, stigma and bias regarding reproductive health, and uncertainty about significant decision factors including risks to their own health and risks to the baby.

Our findings support the need for early and ongoing communication with clinicians about fertility and family planning when uncertainty is high. Women would benefit from conversations about reproductive health being initiated by VA specialists as early as adolescence to open the door for future conversations.