Introduction
Uterus transplantation (UTx) is the only treatment for absolute uterine factor infertility (AUFI) that allows women to carry a pregnancy. AUFI affects 1-5% of women of childbearing age and is caused by either congenital (e.g., Mayer-Rokitansky-Kuster-Hauser Syndrome [MRKH]) or acquired (e.g., hysterectomy) absence of the uterus.1To date there have been at least 60 UTx reported throughout the world and 20 live births.2-4 Baylor University Medical Center (BUMC) has the largest worldwide experience with UTx, having performed 20 UTx resulting in 14 live births to date.5 The goal of UTx is to improve the quality of life for women with AUFI by offering them the opportunity to experience pregnancy and childbirth. UTx has been shown to be reproducible, safe, and successful in terms of live births in multiple studies across the world. Despite the clinical success of UTx, many questions remain about the value of UTx given that its purpose is to improve patients’ quality of life.
Three qualitative studies about uterus transplantation have examined the motivations of women with AUFI to consider UTx, the impact of UTx on the lives of recipients, and recipients’ perceptions of informed consent and decision-making for UTx. Richards and colleagues interviewed 19 women with AUFI who expressed interest in UTx clinical trial participation but had not undergone uterus transplantation. They found that the diagnosis of AUFI negatively impacted self-identity in terms of perceiving themselves as less female and relationships with family, peers, and partners at different life stages. Participants conceptualised UTx as a way to regain reproductive autonomy that was not feasible with adoption or surrogacy.6 Jarvholm and colleagues interviewed 9 UTx recipients up to 5 years following UTx to examine the impact of UTx on recipients’ lives in terms of how UTx changed self-perception, body-image, and sexuality.7 Wall and colleagues interviewed 20 UTx recipients about their perceptions of informed consent and decision making.8 Participants were well informed, motivated primarily by the desire to achieve motherhood through pregnancy, and felt that surrogacy and adoption did not offer the same perceived value as UTx. Wall and colleagues also reported a case series of the pregnancy experiences of the first two UTx recipients at their centre to successfully deliver a child.9These UTx recipients perceived their pregnancies as similar to other women, and derived significant personal value from their experiences.
To date, no studies have compared how women who chose to undergo UTx experience AUFI and UTx or how UTx recipients perceive their experience with UTx in terms of reproductive autonomy. To examine these aspects of UTx, we conducted a mixed methods study of 20 UTx recipients from the Dallas UTerus Transplant Study (DUETS) focused on advancing our understanding of how AUFI impacts women who undergo UTx, how UTx impacts women with AUFI, and how UTx recipients view UTx in terms of their reproductive autonomy.