Guidelines for Neonatal Research Donors Being Developed by IIAM

Many families who receive a non-survivable diagnosis for their baby during pregnancy inquire about organ donation. Too often, they’re told there are no options. In 2012, with the commitment of an exceptional couple, a team of OPO staff and medical professionals, IIAM helped shatter that perception.

Over the past four years, IIAM’s Neonatal Donor Program has given over 60 families an opportunity to create a lasting legacy for their baby. Through those gifts, more than 200 organs and tissues have been provided to researchers who have been able to gain unprecedented insights into how organs develop — right down to the cellular level.

However, many health care professionals are still unaware that neonates with fatal diagnoses such as anencephaly can become donors. IIAM has had an active presence at regional and national conferences that attract neonatologists, genetic counselors and NICU nurses, sharing information about donation possibilities for these tragic situations. Most recently, Gina Dunne Smith presented “Families Considering Donation Options After Infant Loss” at the Neonatal Nursing Conference.

In order to ensure that the myriad legal and ethical issues surrounding these referrals are thoroughly addressed, IIAM and MTF established a multi-disciplinary Neonatal Steering Committee, comprised of respected ethicists, neonatologists, obstetricians, legal experts, OPO executives and donor family members. The goal of the steering committee is to establish protocols that will guide how best to manage neonatal and fetal demise referrals, and to publish the results of our work.

“In addition to making sure that families facing the loss of a baby with severe fetal deformities can consider donation, we aim to be diligent in making decisions that are legally and ethically sound,” said Smith. “We want to play a leading role, and we want to do it right.”

Members of the Neonatal Steering Committee are:
  • Martha Anderson, Executive Vice President, Donor Services, MTF
  • Kavita Shah Arora, MD, Case Western Reserve University
  • Jennifer Birmingham, General Counsel, MTF
  • Maggie Coolican, RN, CFC
  • Aaron Goldenberg, PhD, Case Western Reserve University
  • Sarah Gutin, CNP, Case Western Reserve University
  • Dan Lebovitz, MD, Lifebanc
  • Jeff Orlowski, CEO, LifeShare of Oklahoma
  • Rick Rodriguez, MD, Cleveland Clinic Foundation
  • Joe Roth, President/CEO, NJ Sharing Network
  • Gina Dunne Smith, Executive Director, IIAM
  • Stuart Youngner, MD, Case Western Reserve University
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