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Objectives Birth in the periviable period (22–24+6 weeks) is fraught with ethical, emotional and practical complexities. Professional frameworks advocate for a shared decision- making approach with parents about whether instigation of active, survival-focused care is appropriate for the individual infant. Discussion of survival and neurodevelopmental outcomes is encouraged, but only with vague descriptors of topics to include. Our survey focused on parent-reported, functional neurodevelopmental outcomes for periviable children and the parent experience of pre-birth discussions with professionals. Methods St-Mary's,Manchester is a tertiary neonatal-unit with over 10,000 deliveries per year. Badger.Net records were searched for infants born at periviability. These yielded 271 results, which were screened to exclude infants who died during neonatal-stay. This left 170 results, which were screened via NHS-Spine to exclude infants who died in childhood. This resulted in 157 children whose parents were sent surveys. The survey received favourable ethics review-(22/NW/0052). It consisted of three parts: Parent-assessed Developmental Milestones Parental Stress-Scale Qualitative free-text questions about pre-birth discussions Results There were 10 respondents. Whilst this was lower than expected, parents that did respond provided rich descriptors of experiences. The main findings were: Good correlation between neurotypical and actual milestone achievement 'She is a very happy child. She is very energetic…when she hears another child having fun, she'll want to join in' Significant difficulties in access to compassionately delivered information 'Repeatedly being told not to get my hopes up and he baby may die….the first few times was enough' Overtly negative attitudes from perinatal professionals about medical intervention at birth She midwife was callus. Every time she came to check for a heartbeat she would tell me that my baby would most likely die. I remember her lack of tact and compassion even now' Conclusion The survey highlights the difficulties that parents facing periviable labour encounter when navigating variation in information provision and pervasively negative attitudes from perinatal professionals. The survey results show that periviable survivors can achieve chronologically typical developmental milestones. Parents also highlighted social and communication difficulties their children experienced that is often not discussed. The results are limited by the small number of respondents. The ethics panel wanted an introductory leaflet to be sent out, allowing parents to opt in, and then the actual survey was posted. This two-step system may have contributed to the limited responses. Further, a paper-based survey was selected to be inclusive of parents with internet-access limitations. We wish to pursue an electronic survey in the future.
Peterson et al. (Tue,) studied this question.