Maternal decision‐making for patients offered prenatal myelomeningocele repair

Abstract Introduction To explore the decision‐making process for patients offered prenatal myelomeningocele repair. Methods This single‐center prospective cohort study enrolled women who were candidates for prenatal myelomeningocele repair. Participants completed prenatal and postpartum interviews, which explored their understanding of the risks, benefits, and alternatives to prenatal surgery, their decision‐making process, the factors influencing their choices, and their experiences with the surgery and recovery. Qualitative thematic analysis of interview transcripts was performed. Results Twenty‐eight patients were enrolled, including 25 patients (89.2%) who elected prenatal myelomeningocele repair, one (3.6%) who chose postnatal repair, and two (7.1%) who chose pregnancy termination. All demonstrated good understanding of the treatment options and the potential fetal benefits of prenatal surgery. The majority noted risks of preterm delivery (82.1%), fetal loss (71.4%), and maternal surgical risks (78.6%). Future pregnancy implications noted included need for cesarean delivery (53.6%) and need to delay the next pregnancy (71.4%). Participants balanced hopes for improved outcomes from prenatal surgery with worries about surgical risks and logistical concerns. Patients also considered the presence or absence of family and employer support, financial limitations, and needs of siblings in their decisions. Many patients felt a strong obligation to try any procedures that might possibly help the baby, even at the risk of their own health. Conception of disability and beliefs about the acceptability of pregnancy termination also impacted how participants balanced factors. In postpartum interviews, participants who underwent prenatal surgery considered the prenatal surgery challenging but worth it in exchange for long‐term benefits. Conclusions Participants understood the treatment options for fetal myelomeningocele and balanced a broad array of factors in making treatment decisions. Physicians caring for these patients should understand the financial, social, and logistical realities impacting patients’ choices, acknowledge families’ concerns about the potential impact of disability, and be aware that some patients may be highly motivated to risk their own health to benefit their baby.