I wrote this article for the Jacksonville Transplant Alliance April Newsletter.
I decided that I wanted to share this story with more folks than just those in our transplant community.
April is National Donor Awareness Month and if you are receiving this newsletter you might believe that we are preaching to the choir. You already know about donor awareness, you know to tell your family about your wishes, you talk to people about being a donor, you talk to people about your transplant or the work you do in the transplant community, etc. What you might not know is that there is another organ donor group that want to donate and are having difficulty doing so.
Parents who want to donate the organs of their newborn babies, who for whatever reason, did not survive birth or were born with a defect causing them to live only a day or two, are often told that it is illegal or unethical to donate their organs. Recently a family learned, eleven weeks into the pregnancy, that their child was going to be born with a brain and skull defect and that the child would not live much past birth. This family decided to carry the baby to term so that they could donate the organs and tissues. It took this family up until two days before she gave birth, to find a place that would accept the child as an organ donor. It shouldn't be that hard.
Some families want to donate their baby's organs and tissue but then also want to have the rest of their body used in research to understand the disease process of babies. Families are comforted knowing that their child did not die in vain and that the pregnancy ultimately resulted in saving other infants. In my research I learned that actually determining when an infant no longer has brain function, is actually a difficult determination. Their brains just aren't formed well enough to be able to test for the tell-tale signs of activity or inactivity. This is where the illegal or unethical concerns come into play.
Between 2008 and 2013 only twenty-one infants under a week old were declared eligible to be organ donors. There were certainly more than 21 infants needing lifesaving organ transplants during those years. With a little more education going out to the OB-GYN doctors and patients, we can help the effort to get more neonates eligible for donation. Although some research has been done, doctors and transplant surgeons need to continue to work together, and discover tests that will determine when an infant is brain dead or if a stillborn baby can be eligible for donation.
Have a great day!