“We’re so grateful to IIAM for energizing neonatal donation for research. Because of their collaboration with OPOs across the country, parents now have the opportunity to turn despair into gifts of life.” READ more testimonials below.
Opening Minds and Opening Eyes
We support families facing unforeseen events prior to or immediately after the birth of their newborn, be it a fatal fetal diagnosis, or brain injury during birth. As there are many thoughts and decisions during this difficult time, donation is one that is often present. IIAM’s Neonatal Donor Program supports efforts to pursue organ and tissue donation for medical research once their babies pass from natural causes shortly after birth.
Beginning with a mother’s love for her unborn baby, IIAM established a Neonatal Donor Program in 2012. This program offers a needed service to the research community and to families of babies with fatal fetal diagnoses who will die from natural causes soon after birth, or where other fatal outcomes occur during or shortly after the birth. Working with a Steering Committee comprised of bioethicists, professionals in reproductive law, neonatologists, and other subject matter experts, IIAM has created donor guidelines for screening referrals of neonates and determining options for organ and tissue donation for medical research. Since its inception, IIAM’s Neonatal Donor Program has helped families choosing donation to make an important difference with research studying how organs and cells develop in ways that were once unthinkable. Today, parents who receive a non-survivable diagnosis for their baby during pregnancy have more opportunities to create a lasting legacy for their baby’s beautiful but all-too-brief life by donating his or her organs and tissue for medical research.
Updates on Neonatal Donation
Neonatal Donations as of July 1, 2020
Carrying to Term Interview
Driven by one family’s determination for a positive outcome after receiving a terminal diagnosis of their prenatal baby, IIAM sought to help and, in the process, established its Neonatal Donation Program.
Neonatal Donation Testimonials
Click on the circles below to view the different testimonials.
“These little lungs, heart and spleen were beautiful and well formed. We took care to respectfully preserve tissues for researchers. In this particular case, we were able to test new methods of preservation to increase the value of the tissues for imaging by immunofluorescence microscopy and mass spectroscopy. The multiple tissue donation allows us, for example, to look at location of cells of the immature immune system, comparing lung, heart and spleen at this young age. Heart muscle will be provided to a cardiologist studying maturity of the mitochondria, the powerhouses of heart cells.
The generosity of the family is greatly appreciated. It is through donations like this that we learn so quickly when we least expect it. Recently our work with neonatal lung donations contributed to research describing the difference between receptors for the COVID virus in newborn lung as compared to older children and adult lung. I will see to it that these little angel’s donation helps in such a way to make our world a better place. Please give my sincere thank you to the Family, to the OPO Coordinators, the recovery team and to IIAM staff for doing the very hard work of making this donation possible and so successful.”
“The Purdy’s are that selfless family that wanted to re-write their sweet baby girl’s story by giving her short life a greater meaning. I am in awe of their courage and strength. It is our privilege to help them realize another purpose for their sweet babies.”
– Darla Welker, RN, We Are Sharing Hope SC – South Carolina Organ & Tissue Recovery Services, Manager of Research & Staff Development, AOC
“We’re so grateful to IIAM for energizing neonatal donation for research. Because of their collaboration with OPOs across the country, parents now have the opportunity to turn despair into gifts of life.”
– Bethany and Eric Conkel, parents of IIAM’s 1st neonatal donor – baby Amalya
“The entire staff at IIAM is doing far more than fulfilling the core mission of providing organs and tissues for medical research, education and development. They are offering hope to families like our own with terminal diagnoses and, for this gift, we are eternally grateful. The people at IIAM did a beautiful job of making this experience meaningful in every way.”
– Alison and Dan Brennan, parents of baby Ourania
“Everything that we wanted as far as from her birth and leaving a legacy, everything happened exactly the way we wanted it, so we wouldn’t have done it any other way. We’re just so proud of her.”
– Michael and Brandi Rogers, parents of a neonatal donor
“We thank IIAM for taking a lead role in making this choice available to a growing number of families facing the devastating news of a terminal prenatal diagnosis.”
“It was beyond our expectations to learn how much of an impact our baby’s gifts had on [the researchers], both personally and professionally, and the potential advances that might be made as a result of these donations.”
“Parents of neonatal donors are desperate for information; IIAM provides them with tremendous solace and gives meaning to their unimaginable loss.”
– R. Patrick Wood, MD, FACS, LifeGift Organ Donation Center, Vice President and Chief Medical Officer
“IIAM has everything covered when it comes to honoring these precious gifts — from providing families with resources on their website, to attending our Donor Council reviews.”
– Schawnte Williams-Taylor, LifeGift Organ Donation Center, Director Family Care Services
Share Your Baby's Legacy...
We would love to hear about your baby’s precious gift to medical research, impacting countless lives. Please consider sharing your story as part of your baby’s beautiful legacy.