Neonatal Donation for Research Gaining Momentum

Over the past five years, IIAM has had the privilege of helping some very special families turn a tragedy into a life-affirming experience. Today, parents who receive a non-survivable diagnosis for their baby during pregnancy have more opportunities to create a lasting legacy by donating his or her organs and tissue for medical research.

Through IIAM’s Neonatal Donor Program, 82 families have donated 263 organs and tissues to researchers who are studying how organs develop in ways that were once unthinkable.

IIAM’s well-publicized accounts of the journeys of the Conkels and Brennans, and national media and social media coverage of other neonatal donor families have paved the way for others to travel. As a result of this recent wave of exposure, our ongoing participation at regional and national conferences, and our networking with OPOs, we are experiencing an unprecedented surge of referrals this year.

In 2016, IIAM and MTF established a multi-disciplinary Neonatal Steering Committee to develop best practices for managing neonatal and fetal demise referrals. We’re continuing to work with this group — which includes respected ethicists, neonatologists, obstetricians, legal experts, OPO executives and donor family members. And IIAM will publish data collected since 2012 in this important growing area of organ and tissue donation for medical research.

“We’re proud to be a catalyst for the dramatic increase in neonatal donation, which is not only a boon for medical research, but also a meaningful way for families to honor their babies,” said Gina Dunne Smith, Executive Director of IIAM.