Myths and Facts of Neonatal Organ Donation

By Bethany Conkel

Two weeks ago, in honor of National Donate Life Awareness Month, I shared how neonatal donation has impacted my life and how it has allowed my son to have a lasting legacy. Today I want to talk about some of the myths and facts surrounding neonatal donation options.

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 way 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:

A) 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.

B) There is no minimum weight requirement to donate to research.

C) 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.

D) 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.


To learn more about neonatal donation please visit Purposeful Gift.

Did today’s article make you think of a question about neonatal donation? Feel free to chime in below with your questions, send a private message to All That Love Can Do, or contact me via Purposeful Gift. I would be more than happy to answer your questions.

Was your baby able to participate in neonatal donation? I would love to hear from you. Please comment below or contact me via Purposeful Gift.

If you are still pregnancy and considering participating in donation and would like help through the process, contact me via Purposeful Gift. I would be honored to walk you through the process and offer support.

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Bethany Conkel lives in Ohio and is married to her wonderful husband, Eric. She is the mommy to two amazing children – one who is in heaven, the other here on earth. Bethany carried her precious son, Amalya Nathaniel (meaning: “work of the Lord”, “given by God”) to term after receiving the diagnosis of anencephaly when she was 11 weeks pregnant. Amalya lived for 1 hour and 20 minutes before taking hold of the Lord’s hand. After he passed, his liver, pancreas, and whole body were donated to scientific research. Bethany has since created a website about neonatal organ, tissue, and whole body donation called Purposeful Gift to help other families explore the option of donation. She is also a certified Birth and Bereavement Doula through Stillbirthday.com and serves with Sufficient Grace Ministries.

Embracing His Impact

By Bethany Conkel

“I love my boy. I love my boy. I love my boy,” is all I could manage to force out as I gripped the arm of the chair trying to ignore the intense pain. I never thought I’d find myself in a tattoo parlor, let alone find myself sitting in the chair actually getting a tattoo!! 
After much debate, my momma’s heart was compelled to get a special tattoo for my boy. My reasoning was multi-faceted… Yes, I wanted to remember my son and memorialize him in a special way, but my reasoning went deeper than that. I wanted to celebrate his amazing accomplishments and have a constant reminder of the impact he has had on the world. 
Once my husband and I had wrapped our heads around the fact that our baby’s life would be brief, we decided we wanted to make the most of his life, as well as his death. To do this we created a bucket list to celebrate his life, and we decided to pursue organ, tissue, and whole body donation to allow his death to have an impact on others. This part of our journey was met with many obstacles and finding donation options was surprisingly difficult. In the end, we were blessed to have everything fall into place three short days before my scheduled C-section. We were ecstatic to learn that our son would be able to donate his liver, pancreas, blood and skin samples, and whole body, all to different researchers. Our son did not qualify to donate his organs for transplant due to his size and condition, but we were thrilled that he was able to donate to research and give back in that way.
After we said hello and goodbye to our son we became interested in learning what happened to his donations. Over time we received feedback about each of his gifts. We discovered his liver went to research surrounding cirrhosis and various liver diseases. His pancreas went to study type 1 diabetes, specifically hoping to treat children who suffer from this disease. One of his blood samples went to Duke University for the anencephaly research study, the other blood and skin sample went to create cell lines that will be used in future research studies (allowing him to help even years down the road). Each of these gifts went directly to save or improve the quality of life for others. 
His whole body went to train emergency medical professionals and to improve equipment used in pediatric emergency medicine. He was gone for eight months on what we like to call his “internship” before we received his ashes back. One of his biggest accomplishments during his internship was helping the researchers get a new placement site for a lifesaving procedure approved through the FDA. The researchers had tried to gain approval for this new location for seven years but had no success. After working with our son’s body, they resubmitted the proposed site and finally gained approval. In the letter from the FDA approval board, the researchers were told that the reason they were granted approval this time was due to the images of the neonate donor. This new site and improved equipment is currently being used around the world and the researchers have already received feedback about children’s lives being saved. 
As I sat in that tattoo parlor, gripping the arm of the chair, I couldn’t help but think about all my boy had accomplished in his short time here. I watched the artist carefully fill in the design which rests right above my knee cap, the exact location of the procedure my son helped get passed through the FDA. As pain rushed to the site, I thought about the small boys and girls around the world who would eventually be feeling pain rush to the same location, but for a much different reason. My pain was optional and cosmetic, their pain would be unavoidable and lifesaving. I thought about mommas who would be crying tears of joy that their baby was given a second chance at life. I cried tears of joy mixed with sorrow because my child helped make that possible. Although he was not given a second chance at life directly, he is given a second chance at life indirectly through the lives he helps to save. 
Each time I look down towards my knee I find myself saying “I love my boy. I love my boy. I love my boy.” 

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April is National Donate Life Awareness Month. If you are interested in learning more about organ, eye, and tissue donation you can visit Donate Life America, or the Association of Organ Procurement Organizations. If you are interested in learning specifics about Neonatal Donation options you can visit Purposeful Gift.

Bethany Conkel lives in Ohio and is married to her wonderful husband, Eric. She is the mommy to two amazing children – one who is in heaven, the other here on earth. Bethany carried her precious son, Amalya Nathaniel (meaning: “work of the Lord”, “given by God”) to term after receiving the diagnosis of anencephaly when she was 11 weeks pregnant. Amalya lived for 1 hour and 20 minutes before taking hold of the Lord’s hand. After he passed, his liver, pancreas, and whole body were donated to scientific research. Bethany has since created a website about neonatal organ, tissue, and whole body donation called Purposeful Gift to help other families explore the option of donation. She is also a certified Birth and Bereavement Doula through Stillbirthday.com and serves with Sufficient Grace Ministries.