Family dynamics after diagnosis and surgical treatment of myelomeningocele: using telemedicine as a complementary tool.

purposeThis study aimed to understand the late family dynamics of women who had pregnancies with fetuses diagnosed with myelomeningocele and who underwent fetal surgery using telemedicine as a complementary form of contact.

methodsThis retrospective cross-sectional quantitative and qualitative study was conducted between June 2022 and January 2023 at a private tertiary hospital in São Paulo, Brazil. The study participants, women who underwent fetal surgery for myelomeningocele correction, were invited to answer a questionnaire via Google Forms regarding socioeconomic data, prenatal care, information about fetal surgery, postnatal surgical procedures, and multidisciplinary follow-up of children, as well as the current dynamics of personal and family relationships.

resultsA total of 34 women completed the questionnaires. Their ages ranged from 26 to 44 years, and the majority were white (79.4%), had completed higher education (76.4%), were Catholic (55.9%), and married (94.2%), with a reported monthly income greater than USD 1120 (64.7%). The gestational ages at the time of myelomeningocele diagnosis and fetal surgery ranged from 12 to 24 weeks and 24 to 27.4 weeks, respectively. Approximately 91.2% of the women reported premature childbirths, and 67.7% had newborns with birth weights below 2500 g. All children underwent follow-up by a specialist, with physiotherapy being the most common (94.1%). Regarding special needs, 27 women (79.4%) reported that their children still needed adaptation or special care, with the use of orthoses and/or orthopedic footwear being the most common (88.9%). Women most frequently reported good relationships with their partners (55.9%), family (53%), friends (50%), and other children (50%).

conclusionMost mothers reported that their children needed adaptation; however, adaptation at home or in a car was less common. Though this study provided detailed insight into the experiences of mothers after the diagnosis and surgical treatment of myelomeningocele, further studies are still required, particularly in disadvantaged populations. Understanding family dynamics provides valuable information for health professionals, helping to develop interventions more appropriate to the reality of mothers, who often adjust their daily routines to care for their children.