20 Beyond Screening: personalised antenatal support following a Down syndrome diagnosis

Speaker:- Lucienne Cooper

Facilitator:- Abigail Twumasi

Abstract:- Down Syndrome UK (DSUK) advocates for respectful, informed, and culturally sensitive maternity care when a diagnosis of Down syndrome is anticipated or confirmed. DSUK works to ensure that maternity care upholds equity, access, and informed choice for all families, including those continuing a pregnancy following a diagnosis of Down syndrome. In collaboration with the University of Warwick, DSUK supported a systematic review and meta-analysis examining the psychological wellbeing of parents of children with Down syndrome (Rutter et al., 2024). The review identified higher levels of parenting stress, depressive symptoms, and psychological distress compared with parents of typically developing children. Importantly, findings highlighted inequities in antenatal care, including screening practices often presented as routine, with limited opportunity for discussion and, at times, implicit assumptions regarding pregnancy termination following a high-chance result. To address gaps in equitable access to post-diagnosis support, DSUK partnered with St Georges University Hospitals NHS Foundation Trust and the Down Syndrome Research Foundation to co-develop a Personalised Antenatal Care Pathway for pregnancies continuing after a suspected or confirmed diagnosis of Down syndrome. The pathway promotes continuity of care through named midwives, enhanced antenatal monitoring, and access to counselling, supporting informed decision-making and parental wellbeing (St Georges NHS, 2025). This presentation explores how personalised antenatal care pathways can move maternity services beyond a screening-led model. It highlights the pivotal role of midwives in ensuring access to compassionate, non-directive care and advocates.

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