P3.116: The Implementation of a Perinatal Organ and Tissue Donor Program - Helping Families in Need

Background: Each year, ~6500 people in the United States die while waiting for an organ transplant. At the same time, many parents are receiving the devastating news that their newborn child will have a shortened life-expectancy due to congenital anomalies. We sought to explore the potential for organ or tissue donation from newborns to help reduce the number of patients who die while awaiting transplant while also supporting families through their grief.

Project Description: We have an active Perinatal Palliative Care Team that meets with families during the pregnancy who are expecting a shortened life expectancy for their infant. Through collaboration with Lifegift, our local OPO, we developed a protocol by which select families, during the prenatal period, could plan to donate their infant's organs and/or tissue following their death. We have shared the protocol with other hospitals within one of the largest health systems in the state so that other OPOs can assist families with organ and tissue donation, if appropriate.

Discussion: Over the past 3 years, 13 families have met with both the weeCARE Team and Lifegift during the prenatal period to discuss the potential for organ and/or tissue donation. The most frequent diagnoses include anencephaly, acrania, skeletal dysplasia, severe brain anomalies, and renal agenesis. Many patients have been discharged home with hospice support, and Lifegift continues to support the families, coordinating with the hospice provider.

As of April, 2025, 7 of the 13 families have been able to donate heart valves, which were successfully transplanted into both pediatric and adult recipients. Other donations include biliary tree, liver, pancreas, kidneys with ureter, and femurs for research. Many mothers have continued to pump and donate breast milk to our local breast milk bank to help other babies in need.

Conclusion: Even though several families have not been able to donate due to low birth weight, stillbirth, or infectious concerns, these families consistently express comfort and satisfaction in the knowledge that they tried to make the most of a tragic situation. Of those that were able to donate, families express joy in the face of unimaginable grief, knowing that a piece of their child lives on and has helped another human being to live. When these families have been given the opportunity to meet each other, a profound experience for all who witness, the grief process can be positively affected and potentially shortened for those living without their child. We firmly believe that, in the appropriate circumstance and in the context of family centered compassionate care, newborn infants may provide lifesaving organs and tissue to those in need, and their families can be supported in a manner that promotes recovery from their loss.