All Donations Matter

As many of you know by now, I am extremely passionate about neonatal donation. I love bringing awareness to donation and allowing families to know what options exist so they can make an informed decision when it comes to donation. Although donation is not for every family, many find a special kind of healing from donation and view it as adding an extra layer of meaning to their child’s life when it is brief.

Often when people think of donation, they think of organ donation for transplant and nothing else. Sadly, this type of donation has many complicated requirements which are often difficult for infants to meet. Thankfully, even if they are not the first to be thought of, there are several other types of donation that infants CAN participate in. Having a variety of donation opportunities allows families to make choices that best meet their needs and desires. It also allows more families to be able to participate in donation of some kind.

Today I would like to highlight a very important form of donation which is often overlooked: donation of blood samples to research studies. Not many people think of donating a blood sample as participating in donation, but in reality, this is an important way of participating in donation and giving back to the medical and scientific community.

One current example of such studies is the Hereditary Basis of Neural Tube Defect Study being conducted by Duke University Below is the description of their study from the study website.

The Duke Molecular Physiology Institute (DMPI), formerly the Duke Center for Human Genetics, is currently conducting a genetic study, called “The Hereditary Basis of Neural Tube Defects,” to determine the causes of anencephaly and other NTDs. By studying families with anencephaly and other NTDs, they hope to identify the genes that contribute to the development of the neural tube. They hope this research will eventually lead to more accurate genetic counseling and risk assessment, improved treatments, better prevention methods, and possibly, a cure.

What I love about this study is that it is simple and does not take much time. The family does not miss out on any time with their baby, if they make the choice to participate. The other thing I love is the fact that this type of donation can still bring an extra layer of meaning, healing, joy, and pride to a family that will say good bye to a baby shortly after birth.

To help me show the importance of this type of donation, I have asked two moms to share their experience of participating in this study.


Gabriel’s story of donation told by his mother Andrea
Tuesday, June 14, 2011, Elise and I sat in my living room with Gabriel, still in awe that my anencephalic son was alive, against the odds, after having been born four days earlier with the terminal birth defect.

The doorbell rang. A delivery man was on my doorstep. I passed Gabriel to Elise, his tiny brain exposed by the absence of skull and dressing. I walked into the kitchen and took a package out of my refrigerator, and handed it over to the delivery man. The package contained Gabriel’s umbilical cord blood, preserved at his birth, to be transported to Duke University’s Center for Human Genetics, now the Duke Molecular Physiology Institute, where it would be broken down and studied.

There are a few things I know: 1. Losing a child must be the most painful experience on this earth. 2. No one, not one single person in this world, should ever have to experience such a loss. 3. My son died 6 days after that Tuesday, and his death was beyond my control. 4. Gabriel’s cord blood became part of the foremost study of anencephaly in the world, which continues to yield more information about the causes of anencephaly. Though Gabriel is gone, his legacy lives on in that study.

There is a hope that sustains me: Someday, because my son died, another child may get to live.

Saturday, June 14, 2014, three years after I submitted Gabriel’s umbilical cord blood for study, a group of runners gathered at the Rio Bravo Ranch in Bakersfield, California, 3,000-something miles away from Duke University to raise money for that same anencephaly study. Many participants wore mullet wigs in keeping with the theme, Gabe’s Magic Mullet Run, inspired by the movie “Joe Dirt” wherein the protagonist was born with a defect described as similar to anencephaly, but who is kept alive by a mullet wig given to him by his mother to protect him. As I stood in front of that crowd moments before the start of the race and shared with them why we were gathered, my heart swelled with pride. They were there running for the real-life mullet, the real-life answer to the mystery of anencephaly. They were running to find a cause, a treatment beyond palliative care, maybe even a remedy someday. They were running because my son lived. If only for a brief time, he still lived. His unique set of stem cells and DNA are his “footprint” in this world and, three years after his passing, he’s still making tracks.


Eli’s story of donation told by his mother Aimee
Where do you turn when you are told there is no hope? How do you get out of the darkness that it creates? You search for that hope. You find that glimmer of light in the darkness.

We found out our son, Eli, had anencephaly at our 20 week anatomy scan. After the shock and some of the numbness wore off, my husband and I began to search for answers. We were surprised to find there weren’t many. As we are both registered nurses, this was very hard for us. We like answers. We like to know the facts. What went wrong?

In my research, I stumbled across a study being conducted by Duke University. I was impressed with the study and immediately presented the idea to my husband. After discussing it together and then with my Obstetrician, we knew this was going to be part of the legacy we wanted for our son.

A few weeks before Eli was born, the package containing the sampling kits arrived. I simply packed it away with all of the other hospital gear. A sense of purpose came with that package. Eli was going to be able to help others; give others the answers we were desperately searching for. It was so simple on delivery day. A blood sample from me, a sample from my husband, and cord blood from Eli. A small effort on our part to be able to give hope for answers. We completed the interview a few weeks later. The process was complete.

Even though we were not able to save Eli, it is our hope the blood samples will help give better understanding of the disorder that killed our son. In the future maybe other families will avoid this heartache because of information that was found in Eli’s cells. This was the gift Eli that was able to give us: hope.


The gift does not have to be big to bring change, give hope, or save a life. One vial of blood can make a lasting difference. I want to send a special thank you to each family who has participated in some form of donation. You and your child are heroes. Thank you also to the researchers who are looking for answers, prevention, and cures and in the process has allowed our children to have a lasting legacy. Finally, thank you to Andrea and Aimee for sharing their stories.

Visit our Donation Types & Facts page to learn more about the various types of donation that are available for neonates.

To look for current studies involving other types of birth defects, many of which need blood samples, please visit

To learn more about Gabriel and his journey, please visit Andrea’s blog: Gabriel’s Message

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