"We want to do everything": how parents represent their experiences with maternal-fetal surgery online.

OBJECTIVE

There is little available evidence on how patients make decisions regarding maternal-fetal surgery. We studied online patient narratives for insight on how pregnant women and their partners consider such decisions.

STUDY DESIGN

We used Google search strings and a purposive snowball method to locate patient blogs. We analyzed blog entries using qualitative methods to identify author details, medical information, and common themes.

RESULTS

We located 32 blogs of patients who describe maternal-fetal surgery consultation. Twenty-eight (88%) underwent fetal interventions. Most (91%) explicitly described consultation with maternal-fetal surgery teams; 83% of those depicted making decisions prior to formal consultation. Few expressed regret for decisions made (6%).

CONCLUSIONS AND RELEVANCE

Patients openly share experiences with maternal-fetal surgery online. Women portray their decisions as made outside of formal medical processes and overwhelmingly feel these decisions were "right". As the field of maternal-fetal surgery expands, prospective evaluation of patient decision-making is needed.