The Incredible Team Who Gave My Son’s Short Life Extra Meaning

Like many people, I’ve never meet a celebrity, and odds are I probably never will. But my husband and I have met several people who have become personal celebrities! I never expected to meet these people, but I’m so thankful I did. I had no idea what an incredible impact meeting them would have on our lives.

I’ve previously written about my son — how he passed shortly after birth and how he became a donor by giving his liver, pancreas and whole body to research. What I have not shared much about are the people who made his donation possible. The people who worked behind the scenes to orchestrate and facilitate each of his donations — the people most donor families never get to meet.

Some of the incredible people we have met include the coordinators at our organ procurement organization (OPO), Life Connection of Ohio, and the organization who found research recipients for our son’s organs, the International Institute for the Advancement of Medicine (IIAM). Although some people may not think meeting the coordinators who assisted with donation would be important, for us it was incredible. The coordinators were the first people we spoke to on the phone. They were the people who finally gave us a yes after hearing many nos during our six months of searching for options.

They are the people who explained the donation process, told about the research studies our son’s organs would help and supported us as we tried to make the decisions that would best meet the desires we had as a family. The coordinator at our OPO made all the arrangements for a recovery surgery to take place at our hospital, and the coordinator at IIAM made flight arrangements for our son’s gifts to make it to the research recipients. These ladies showed deep compassion and sympathy as we planned our son’s birth and passing. It was wonderful to meet the people who did so much to make our donation possible and thank them face-to-face.

We met the individuals who performed our son’s recovery surgery — the men who actually held our son in the operating room after he died and carried out our wishes for him to be a donor. I remember wanting so badly to thank them for taking care of my tiny baby and treating him with dignity and respect during his recovery surgery. When I finally was able to look them in the eye, say thank you and wrap my arms around them, my heart almost burst. I will be forever grateful that I met the men who were with my baby when I couldn’t be.

We met the individuals who decided to allow other neonatal families to donate to research by creating a neonatal donor program at IIAM. We have also met the staff that now regularly serves other neonatal families. Meeting them, talking to them and telling them what a difference they are making has been both rewarding and healing. Knowing the people who are providing this service has allowed me to encourage other families as they consider donation because I know they will be in good hands. I know these people do not take our circumstances lightly; rather, they are touched by each unique situation, each family’s wish to donate, and they have a genuine desire to help with a deep level of care.

It was also amazing to learn how many of these individuals played roles (both big and small) in our son’s donation, as they assisted the coordinator we spoke with on the phone by working out various details, assisting in paperwork, speaking with researchers, giving approval for things to move forward, and supporting our desire to donate. I love knowing both the names and faces of these people — the people who made my son’s donations possible. I’m so glad we were able to thank them in person for what they did to help us.

We met the person we consider to be our son’s primary “recipient” — the researcher who worked with our son’s whole body for eight months, during what we like to call his “internship.” It is almost unheard of to meet a recipient of a research donation, so we viewed meeting the researcher as a small miracle! Meeting this man was incredible. In many ways he spent more time with our son than we did, and during that time he was able to extend our son’s legacy by leaps and bounds. Having the opportunity to hear directly from him about all the things they learned from our son and how our son was able to help get a new device passed through the Food and Drug Administration was amazing. We learned how deeply he cared for our son and how he viewed him as so much more than just a “cadaver.” His entire team treated him with care, respect and dignity during the entire length of his internship.

We also discovered how thousands of other doctors will learn from our son through training sessions and printed material. Hearing the researcher express his gratitude for our son’s gift brought tears to my eyes and made me feel proud as a momma. I felt so much closure and peace after being able to talk with, thank and of course hug this incredible person we will feel connected to forever.

Meeting each of the people who allowed our son’s life to have an extra layer of meaning and were the “hands and feet” to making our son’s donation possible has brought us joy, healing, pride and made us feel a little closer to our son. These meetings have become some of the highlights of our journey. They are memories that we now hold dear. None of these people are celebrities and the world wouldn’t recognize their names if I listed them, but for us, meeting them was better than meeting any celebrity.

Follow this journey on Purposeful Gift.

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