Presented at the Neonatal Society 2006 Spring Meeting.
Breeze ACG1, Lees CC1, Kumar A2, Missfelder-Lobos H1, Murdoch EM2
1 Division of Maternal-Fetal Medicine, Box 228, Addenbrooke’s Hospital, Cambridge, CB2 2QQ, UK
2 Neonatal Intensive Care Unit, Box 226, Addenbrooke’s Hospital, Hills Road, Cambridge, CB2 2QQ, UK
Objectives: To determine timelines, outcomes and parental decision-making when a diagnosis of lethal fetal abnormality is made, and establish basic principles for ‘perinatal palliative care’ an alternative to termination.
Methods: This was a prospective observational audit and ethical approval was not by the LREC. Population was Women referred to fetal medicine centre after 18 weeks gestation, in which a diagnosis of one of three categories of lethal fetal abnormality was made. Data were collected prospectively in cases where a diagnosis of lethal abnormality was made. The main outcome measures were the proportion of women who chose to continue the pregnancy. Time to specialist confirmation of lethal abnormality; time to decision following initial referral; time to neonatal death if baby was live born. Proportion consenting to post-mortem.
Results: The time to specialist confirmation following initial ultrasound was up to 14 days (median 6 day), and from specialist confirmation of lethality to decision on terminating or continuing the pregnancy up to 8 days (median 1.5 days). In 8 of 20 cases, the parents continued with the pregnancy. Two babies were stillborn and the six live born babies lived for 1 hour-21 days (median 1 day).
Conclusion: Forty percent of parents faced with a diagnosis of lethal fetal abnormality chose to continue their pregnancies. The time taken for referral, specialist investigation and decision-making may be over 2 weeks. The majority of babies where parents chose to continue the pregnancy were live born, however no nationally agreed guidelines nor resources for ‘perinatal palliative care’ of these babies exist.
References
Statham HE. Fetal and Maternal Medicine Review 2002;13(4):217-247.
Leuthner SR. Pediatr Clin N Am 2004;51:747-759. Royal College of Obstetricians and Gynaecologists (Great Britain) Ethics Committee, London: RCOG Press, 1998