Nunes Tatiane Santos, Araujo Júnior Edward, Rolo Liliam Cristine, Sañudo Adriana, Cavalheiro Sergio, Moron Antonio Fernandes
Department of Obstetrics, Paulista School of Medicine - Federal University of São Paulo (EPM-UNIFESP), São Paulo-SP, Brazil.
Department of Preventive Medicine, Paulista School of Medicine - Federal University of São Paulo (EPM-UNIFESP), São Paulo-SP, Brazil.
Childs Nerv Syst. 2025 Aug 11;41(1):259. doi: 10.1007/s00381-025-06920-3.
This 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.
This 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.
A 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%).
Most 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.
本研究旨在了解怀有被诊断为脊髓脊膜膨出胎儿且接受胎儿手术的女性的晚期家庭动态，以及她们如何通过远程医疗作为一种补充性联系形式来应对。
本回顾性横断面定量和定性研究于2022年6月至2023年1月在巴西圣保罗的一家私立三级医院进行。研究参与者为接受脊髓脊膜膨出矫正胎儿手术的女性，她们被邀请通过谷歌表单回答一份问卷，内容涉及社会经济数据、产前护理、胎儿手术信息、产后手术程序、儿童多学科随访，以及个人和家庭关系的当前动态。
共有34名女性完成了问卷。她们的年龄在26至44岁之间，大多数为白人（79.4%），完成了高等教育（76.4%），是天主教徒（55.9%），已婚（94.2%），报告月收入超过1120美元（64.7%）。脊髓脊膜膨出诊断和胎儿手术时的孕周分别为12至24周和24至27.4周。约91.2%的女性报告早产，67.7%的新生儿出生体重低于2500克。所有儿童均接受专科医生随访，其中物理治疗最为常见（94.1%）。关于特殊需求，27名女性（79.4%）报告称她们的孩子仍需要适应或特殊护理，其中使用矫形器和/或矫形鞋最为常见（88.9%）。女性最常报告与伴侣（55.9%）、家人（53%）、朋友（50%）和其他孩子（50%）关系良好。
大多数母亲报告称她们的孩子需要适应；然而，在家中或车内的适应情况较少见。尽管本研究详细洞察了脊髓脊膜膨出诊断和手术治疗后母亲的经历，但仍需要进一步研究，特别是在弱势群体中。了解家庭动态为卫生专业人员提供了有价值的信息，有助于制定更适合母亲实际情况的干预措施，因为母亲们常常会调整日常生活来照顾孩子。
