Love vs. Risk: Women with Sickle Cell Disease Face Reproductive Decision-Making Dilemmas

Sickle cell disease/trait (SCD/T) is the most common genetic blood disorder in the U.S., characterized by painful vaso-occlusive crises resulting in considerable morbidity and premature death. Advances in treatment have somewhat improved the quality of life and longevity. Therefore, people with SCD/T are now living into their reproductive years. However, pregnant individuals with SCD have a maternal mortality risk of up to 26 times higher than the national average. Individuals with sickle cell trait also have an increased risk of untoward maternal health outcomes. We sought to understand reproductive health concerns among women with SCD/T, through data collected from patients, caregivers, advocates, and healthcare professionals using key informant interviews and focus groups (N = 54). Audio recordings were transcribed verbatim, coded inductively, and analyzed thematically. Three major themes emerged: (1) the Dilemma of Love vs. Risk, (2) SCD/T Knowledge, and (3) the Mental and Emotional Toll of SCD/T. Reproductive concerns and experiences among women with SCD/T influence their mental health and social engagement. Programs are urgently needed that address the unique SCD/T reproductive health risks and communication and support needs. These include readily accessible, age-appropriate SCD/T reproductive health information, counseling, and engaging communication tools for women and their potential partners. Support requires a multidisciplinary approach.