PM2027: Supporting Parental Bereavement Through Organ Donation in Perinatal Palliative Care

Introduction: With advances in screening during pregnancy, potentially life-limiting fetal anomalies are more readily identified. This allows the opportunity for parents to have perinatal palliative care consultations to explore goals and development of a plan for those opting for comfort care. As part of this plan, parents can address their wishes for organ donation for education or research can be addressed. This may provide a method to support parents experiencing complex grief following the death of their baby.

Case Description: Parents expecting a son with hypoplastic left heart syndrome were referred to palliative care prenatally. Their expressed goals were initially consistent with pursuing surgical palliation, but their son was later found to have atrial restriction and pulmonary valve dysfunction. Given change in prognosis, family’s goals shifted to comfort-focused care after delivery. A birth plan was developed which included parents’ wishes to forego echocardiogram after delivery; transfer to the pediatric hospice inpatient unit for end of life care should he survive to discharge from the delivery hospital; and for heart donation for educational purposes.

Following their baby’s death, his mother experienced complex grief with significant questioning of their decision not to pursue surgical palliation. As the baby’s heart had been donated, our team was able to facilitate a meeting with the pathology department staff and review her son’s heart anatomy and compare it with a normal infant heart. They were also told that their son’s heart had contributed to the education of students. This provided the family reassurance and support to help them through their bereavement process.

Discussion: The donation of organs and tissues from neonates for transplantation has been a relatively infrequent occurrence (0.03 to 0.21% of organ donors annually); donation for research is even less common. However, it gives an opportunity to help bereaved parents in providing to process their grief; to make an altruistic gift; and for their child to have a legacy.

Conclusion: Including a question about organ donation in a comfort care birth plan allows for exploration of parents’ goals for this gift and allows time for coordination and planning prior to delivery.