Perinatal Death and Organ / Tissue Donation

A sticker that I made for Flash

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:

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4 Comments

  1. A beautiful video and tribute. Thank you so much for posting.

  2. Hi… I stumbled upon your blog and I wanted to let you know that I love how you addressed neonatal donation. Most people will not even talk about it. I also wanted to let you know that things are changing in the world of neonatal organ/tissue donation. More options are being made available to parents through organ/tissue donation for medical research. I have a website about neonatal donation that you may find interesting. It is http://www.purposefulgift.com – I created it after my son passed away from anencephaly. He lived 1hr 20min and once he passed we were able to donate liver, pancreas, and whole body – all for research. No vents were needed and once his donation surgery was finished we were able to have him back and continue making memories for several hours. Bless you for working with our precious families.

    • I agree that this topic needs to come out of the shadows and parents need to be given more options. I am emphatic, however, that we never let individuals desire to donate pressure us to change the core ethical rules that were set in place to protect everyone in the first place. That TV show that had a fictionalized storyline of parents pressuring staff to compromise ethical guidelines that would allow their anencephalic infant to donate organs because they “really wanted to” should never be a part of our reality.

  3. I am very much in agreement that we need to maintain the ethical guidelines that have been established. I am happy we were able to participate in donation after my son, and still maintain those guidelines.

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