Perinatal Death and Organ / Tissue Donation
I wrote this page 6 years ago and I will leave it as it was so that you can see where we have gone since. This world is evolving and is more sophisticated than 6 years ago but (thankfully) still functioning with its long held ethical boundaries in place (from what I understand).
I have come to know of Perinatal Palliative care cases where tissue (NOT ORGAN) donations went forward after natural death of the baby (in their parents arms) which were hugely successful to ethically obtain tissues for research. To maximize all options, it is ideal to have the tissue retrieved within 2 hours of the death, so complex & detailed plans for tissue retrieval have to be in place for that to happen.
If a mother / couple is interested in pursuing such a plan, they need to be in touch with their local Organ Procurement Organization and speak to a coordinator. List of all US Organ Procurement Organizations here
Please know that the resources to undertake a plan like this are so extensive, the OPO may decline an offer of donation and it isn’t because they don’t feel its a worthy pursuit. I have heard of parents living in remote areas where the needed teams simply couldn’t be committed based on the uncertainty of birth times and amount of time the baby might live.
2012 Post on this topic
When I studied Clinical Pastoral Education, I was trained to be a “Designated Requestor” that would approach families to ask if they would consider allowing their loved-one to donate tissue after death. Another person with more in-depth training was required to request organs. I was already an RN by then and I thought a thing or 2 about tissue/organ donation. Honestly, as I was trained, I became truly horrified to realize how little I knew of donation as a nurse. It is with that memory that I embark on an attempt to educate people on this sensitive but important topic and how it interfaces with the world of infant death.
I dread this, though. I dread it because there are lunatic fringe people out there who repeat things they heard from ill-informed people that aren’t true and they accuse the medical establishment of horrible things we don’t do. Big sigh. If you post a comment claiming that doctors fake deaths to steal organs or people regularly awake fully well from brain death, I will refer back to this and then I will tell you that you make me weary.
In general, tissue and organ donations in the neonatal population are rare, probably much rarer than you thought. I have cared for over 700 babies who died and I remember 3 (maybe 4) and that is a comparatively large number, I have heard of places where they have done none. Interesting, 2 of these 3 donor moms are now good friends, but I digress.
It is important to know the difference between organ donation and tissue donation.
Organ donations are only retrieved from ventilated, heart-beating donors who have been declared brain-dead. The disease processes that end the lives of newborns rarely ever leave them in a state of being ventilated with a heart beat and demonstrable brain death. Babies die from prematurity, birth defects, infections (and other stuff) most of which lead them to respiratory and/or cardiac death prior to getting anywhere near brain death. People sometimes think that organs could be retrieved from babies without full brains/skulls (anencephalic infants) but brain death criteria can’t be established in those babies. It’s been tried to ventilate them until brain death criteria was met, to allow the possibility of an organ donation, but they (some of the smartest minds around) were not successful in finding a way for that to work.
There is also something called DCD – donation after cardiac death. (This explanation from Jill Wilke RN) To be a donor after cardiac death, the baby must still be on a ventilator and have a situation where the team feels that the baby’s heart will stop beating quickly after the ventilator is removed. This usually takes place in the operating room. A parent can be in the OR with the baby until his heart stops. The team then will recover the organs (end of Jill’s words). We don’t do this with infants in our hospital, so I have no experience with it.
Tissue donation…that is another story all together. There are 3 tissues that can sometimes be retrieved from baby who has already died when they meet specific criteria. Corneas, heart valves and sometimes (but not commonly) liver cells. First you have to know when the death happened (often within the preceding 12 hours) and the baby has to have a minimum weight. The heart valves are used to fix the hearts of babies with congenital heart diseases but in order for the valves to be big enough, the baby has to be in the 8 pound range. Most often, the time of a stillbirth is unknown and the weight of babies born alive (who then die) is not enough.
The liver cell option is new and if you choose, you can watch the video below of the first baby in our state to donate liver cells for the Urea Cycle Disorder clinical trial. This option is for non-transplantable livers but it had to be removed within 3 hours after a death.
This topic is important to discuss because both misperceptions and ignorance can cause families a great deal of angst at a time of infant death and they already have enough to think of at that point. The general public does seem interested in the whole topic, so we need for people in general to get accurate info and not perpetuate a lot of the misconceptions that circulate about donation.
In the hospital, nurses should NOT bring this up first with families. If a family asks, get a designated requestor to speak to them.
For parents who learn that their child will likely die at birth, it has been my experience that they don’t choose to carry their infant just to have the option of donation, in fact that idea strikes me as quite odd. They carry their children to experience and appreciate their lives while they are living; their child was treasured for their own innate value, not as a handy tissue source. If considered donations don’t work out, there is no failure because the child was who they were and that is enough.
For anyone who wants to see what a tissue donation situation might look like, you can watch this video I made. The parents have given me written permission to share it and a Spanish version was made for Univision.
Flash and His Gift: