Outcomes and factors influencing care decisions in life-threatening fetal and neonatal anomalies

Objective A retrospective chart review was undertaken to describe the outcomes following the diagnosis of a life-threatening fetal and neonatal anomaly. Study Design Criteria for a life-threatening anomaly included genetic conditions, renal and pulmonary diseases, central nervous system anomalies (CNS), and cardiac defects. Information that could impact decision making was collected from provincial databases Results 176 patients met the inclusion criteria. The majority of the diagnoses were in the genetic and CNS categories. 58% (n=103) decided to terminate the pregnancy. When a live birth occurred (n=39), the mean length of survival was 13.5 days (range 1-156 days), with one death occurring at home. Conclusions Ethnicity and geographical factors were associated with the decision to terminate a pregnancy. The involvement of the palliative care service was associated with decreased interventions. Further research to determine the needs of families would be helpful in identifying program priorities in perinatal palliative care. ### Competing Interest Statement The authors have declared no competing interest. ### Funding Statement The authors thank the Manitoba Institute of Child Health (MICH) and the Winnipeg Regional Health Authority Pediatric Palliative Care Grant for the financial support. ### Author Declarations I confirm all relevant ethical guidelines have been followed, and any necessary IRB and/or ethics committee approvals have been obtained. Yes The details of the IRB/oversight body that provided approval or exemption for the research described are given below: Ethical approval was obtained from the University of Manitoba Health Research Ethics Board. Site access and further approval was obtained through both hospitals where data collection took place. All necessary patient/participant consent has been obtained and the appropriate institutional forms have been archived. Yes I understand that all clinical trials and any other prospective interventional studies must be registered with an ICMJE-approved registry, such as ClinicalTrials.gov. I confirm that any such study reported in the manuscript has been registered and the trial registration ID is provided (note: if posting a prospective study registered retrospectively, please provide a statement in the trial ID field explaining why the study was not registered in advance). Yes I have followed all appropriate research reporting guidelines and uploaded the relevant EQUATOR Network research reporting checklist(s) and other pertinent material as supplementary files, if applicable. Yes Data no longer available due to time since data collection/research completed * CI : confidence interval GA : gestational age ICD : international classification of diseases IUD : intrauterine death LR : likelihood ratio PPC : pediatric palliative care