Publication
THE WEST MIDLANDS PERINATAL PALLIATIVE CARE SERVICE AUDIT ON REFERRALS, DIAGNOSES AND PROGNOSES OF BABIES WITH SEVERE CONDITIONS
Mott C · Archives of Disease in Childhood · 2024
Objectives The West Midlands Perinatal Palliative Care Service based at Birmingham Women's and Children's NHS Hospital Trust is one of the busiest services in the UK after being in operation only 2 years. The service offers support to all West Midlands hospitals, and is able to follow babies through neonatal, paediatric, community and hospice services. This audit aimed to review 2 years of collected data, considering numbers of referrals, diagnoses and particularly looking at prognosis of four common diagnostic groups referred: congenital cardiac lesions, lethal skeletal dysplasias, trisomy 13 and 18, and anencephalies. Methods This audit considers the 24-month period November 1 2021 to Oct 31 2023. The groups above were chosen to be highlighted as the most frequent and/or homogenous diagnoses referred, to avoid identifiability and build consistent information for clinical teams and families as to predicted survival. Babies that had congenital cardiac conditions as part of a significant wider multi-system condition were not considered in the prognosis component of the audit to improve generalizability, although the audit acknowledges it is possible a multisystem diagnosis on the inclusion list was missed. Results The antenatal referral pathway is most commonly used for referral into the West Midlands Perinatal Palliative Care Service. In the year 2021 to 2022 there were 32 antenatal referrals, and in 2022 to 2023 there were 55 antenatal referrals. The diagnoses were diverse, many had multisystem congenital anomalies without a clear unifying diagnosis and there were many single presentation rare conditions within the group. The most frequently antenatally referred condition (24 babies) was severe congenital cardiac anomalies, which had the possibility of univentricular procedures after birth. Across the two years there were 11 babies referred with lethal skeletal dysplasia, and 14 with trisomy 18 or 13 (and an additional 5 referred postnatally after a later diagnosis). There were two babies with anencephaly referred antenatally and an additional two referred postnatally. Initial data on these severe diagnoses demonstrates variability in prognosis, with data collection ongoing currently to include the journey of babies referred but still due to be born. Conclusion Even in some of the most severe perinatal diagnoses there is variability in length of survival. Fetal Medicine and Neonatal services should engage in robust parallel planning alongside Palliative Care services for all these babies, acknowledging this variability and preparing families for eventualities including survival to home discharge and even beyond.
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