Parent Decision-Making With Fetal Surgery for Myelomeningocele

Abstract

IntroductionThe objectives of this study were to understand how parents made the decision to do maternal–fetal surgery for myelomeningocele and to determine the influence of the shared decision-making model on their choice.MethodThis is a qualitative study of parents in a fetal care center after fetal surgery. Interviews were recorded and transcribed. Analysis was completed using iterative code development, and thematic saturation was reached.ResultsRapid decision making, often before seeing fetal care professionals, was present, parental agency drove the decision for surgery, exposure to other parents via the Internet was key to reducing uncertainty and increasing hope for the future, positive interactions with the healthcare team played a role in parental choice for surgery, and mothers were surprised by unanticipated pain and discomfort following surgery.DiscussionTenets of shared decision making, such as patients feeling supported by their healthcare professionals, were present. Results learned from this study could be used to tailor interactions with parents seeking fetal surgery.

On the Cutting Edge

“…One study found that women pursuing fetal intervention often knew what decision was right for them even before their appointment with medical specialists. In fact, mothers portrayed that they felt compelled to do what was best for their baby, often with less consideration for their personal well-being (Fry & Frader, 2017; Hansen, et al, 2023). This decision-making framework is one of several ethical issues that must be explored and carefully considered during the prenatal counseling process.…”