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National Donate Life Month: How to care for families of organ donors, give them support on their grief journey

April 1 marks the start of National Donate Life Month, and Friday “All Indiana” host Alexis Rogers spoke to Tara Storch, co-founder of Taylor’s Gift Foundation and the mother of a young girl who died in an accident and donated her organs.

Storch was also joined by Macey Levan, JD, PhD. Levan is the Associate Professor of Surgery and Population Health at NYU Grossman School of Medicine, Director of the Center for Surgical and Transplant Applied Research and Qualitative Core at NYU Langone Health. Levan is also a living organ donor herself.

They came together to share everything people need to know about their new Kindred Hearts program, the importance of organ donation and more.

When the Storches lost their 13-year-old daughter, Taylor, in 2010 in a tragic skiing accident, she became an organ donor and saved the lives of five people. While Taylor’s donation brought comfort to the Storches, it also surfaced a myriad of other emotions they weren’t equipped to handle.

“Grief manifests itself in different ways for all of us,” said Tara. “For families of organ donors, I believe it’s a bit more of a unique kind of grief. On the one hand, you’re stunned by the sudden loss of your loved one while at the same time feeling an immense sense of gratitude that they were able to extend a second chance of life to others. Organ donation is just that – a mix of grief and gratitude.”

Since the launch of Taylor’s Gift Foundation in 2010, the Storches have immersed themselves into the world of organ and tissue donation, becoming passionate advocates. Through their experiences, they have identified a need to have dedicated emotional support available specifically for families of donors.

“We decided to redefine the mission of Taylor’s Gift Foundation and launch what we named the Kindred Hearts Program,” said Tara. “Through a partnership with Heritage Health Solutions, a behavioral health company designed to help individuals struggling with a variety of behavioral health situations including grief, we will offer support groups led by trained volunteers and individual support through Caring Guides to assist donor families in navigating their grief process for as long as they need it at no cost to them. We provide donor families with the opportunity to connect with a network of people who have experienced similar emotional pain and trauma.”

Dr. Macey Levan, Associate Professor of Surgery and Population Health for NYU Langone Health and the Director of the Center for Surgical and Transplant Applied Research Qualitative Core, has been working with the foundation on a pilot program. She is currently working on research that shows the different grieving process a donor family goes through.

“A program like this truly has the ability to fill a gap that we know exists based on some scientific work that were doing,” Levan said. “One thing that we can do that is not being done is give them grief counseling and support opportunities outside of the traditional things that we’ve determined exist.”

Levan says a donor and transplant process can be hard to understand, especially during a traumatic time like losing a loved one. This program helps guide that understanding and helps families know what to expect next. Working with the Storch family and foundation has shown them a unique insight that Levan said was missing.