Abstract

The majority of research papers published on obstetrical outcomes in Ehlers-Danlos syndrome (EDS) have focused on the contribution of maternal EDS to the risk of poor pregnancy outcomes. The purpose of our study was to further clarify the fetal versus maternal contribution of EDS to poor pregnancy outcomes. A web-based, anonymous questionnaire was developed to collect pregnancy histories of families with a member with EDS. The survey was disseminated via social media through the Ehlers Danlos National Foundation. Population descriptors (age, gender, EDS diagnosis, age of diagnosis) and pregnancy descriptors (number of pregnancies, live births, and birth complications) were collected. To identify fetal and maternal contribution of EDS to poor pregnancy outcomes, three groups were compared based on maternal or infant diagnosis (EDS versus non-EDS). The rate of birth complications, treatment for preterm birth, and occurrence of preterm birth, as well as gestational age at preterm birth, were different depending on maternal/ infant EDS status, and these differences were significant when comparing infant EDS status but not when comparing maternal EDS status. The occurrence of PPROM is increased in the non-EDS mother/EDS infant group compared to both EDS mother/non-EDS infant and EDS mother/EDS infant groups (38.9%, 12.5%, 14.8%, p = 0.025). This study identifies that poor outcomes in EDS pregnancies differ depending on the maternal and the fetal EDS status. These insights into maternal and fetal association with certain poor pregnancy outcomes in pregnancies complicated by EDS can further guide physicians in educating, managing, and treating these women during pregnancy.

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