In honor of National Donate Life Awareness Month, I wrote this blog post for All That Love Can Do, a site that supports families who continue their pregnancy after a fatal diagnosis. I write for ATLCD monthly, and although I typically do not share the posts here, I thought the content of this post worked nicely here as well. There is lots of misinformation surrounding neonatal donation, hopefully this will help others who are considering donation.

Before I start, I want to be clear on one thing: I think each and every life has intrinsic and inherent value. Each one of our precious babies has had an impact on the lives of others and this world. I do not believe donation makes a life “more valuable,” nor do I believe that families who chose to donate are “better” in any way. I do, however, believe that donation can add an extra layer of meaning to a life that is brief and that donation is one way to create a lasting legacy for our babies. I also believe that families should be given the choice to participate in donation, and then supported equally regardless of what they decide about donation.

With that said, I would also like to point out that the world of neonatal donation has been growing and advancing in big ways over the past few years. What was available ten years ago is much different than what was available five years ago, and that is much different than what was available two years ago, and that is even different than what is available NOW. So, if you read something and say “that’s not what I was told”, you are probably are correct, that wasn’t what you are told, but there is a good chance things have changed.

Myths and facts of neonatal donation:

• Myth: My baby will be alive while the surgery takes place, or my baby will be in pain if they participate in donation.
• Fact: A recovery surgery only takes place AFTER a baby has passed away and their heart is no longer beating. Neonatal donation NEVER takes place while the baby is still alive. Your baby will not feel any pain if they participate in donation.

• Myth: My baby will need to be taken to the surgery moments after they pass away.
• Fact: In neonatal donation situations, most of the time there is a window of time before a recovery surgery would need to take place. Often you could have anywhere from 45 minutes to 12 hours with your baby after they pass away before a recovery surgery would need to take place, depending on what is being donated.

• Myth: Even if my baby doesn’t need to go for surgery right away, I will still lose time because I won’t get to see them again after the surgery.
• Fact: In most cases, if the family desires, arrangements can be made with the recovery team and the hospital to have your baby brought back to you after the surgery so you can continue spending time with your baby and making memories .

• Myth: My baby would not qualify for donation because….
• Fact: Yes, it is true that there are qualifications (weight, gestation age, when death occurs, your baby’s condition, the organ procurement organization that is near you, your delivery hospital, etc.) to participate in any form of donation but, due to recent developments in neonatal donation:
  •  In some cases, organ/tissue donation for research may occur as early as 28 weeks gestation. In some cases, organ/tissue for transplant may occur as early as 36 weeks gestation.
  • There is no minimum weight requirement to donate to research.
  • Babies with a variety of conditions including (but not limited to): anencephaly, acrania, trisomy 18, and hypoplastic left heart syndrome can donate to research and, in some situations, transplant.
  • The same exact process is used to recover organs/tissue for transplant as for research.

• Myth: The only type of donation that “really helps” is organ or tissue donation for transplant.
• Fact: Organ donation for research is just as important as organ donation for transplant. Donation for research is also the most viable option for most situations. Often researchers are using gifted organs or tissue with hopes of curing pediatric illnesses. In many cases, neonatal organs produce enzymes not found later in life, so these gifts are priceless from the research perspective.

• Myth: My (_____) told me donation wasn’t an option, and it must be true.
• Fact: Due to the fact that things are changing continually in the world of neonatal donation, many times doctors, nurses, genetic specialists, other loss moms, and even some employees of organ procurement organizations are not familiar with the most CURRENT options for neonates. If you would like to participate in some form of donation, but were told nothing exists, please be persistent; do not take the first “no” as a final answer.

Did this blog make you think of a question about neonatal donation?  Feel free to chime in below with your questions or contact us. We would be more than happy to answer your questions. If you have a story of neonatal donation, also feel free contact us. We would love to hear your story. As always, if you are in the middle of pursuing donation and would like help, we are happy to assist you in any way possible.

If you would like to help share facts about neonatal donation with your medical care provider, feel free to download and print our Neonatal Donation Fact Sheet for Medical Professionals!