Donate Life Wall celebrates the gift of transplant

By Maureen Gilmer, IU Health senior writer, mgilmer1@iuhealth.org

As a child life specialist on 9 West at Riley Hospital for Children, Maddie Rodriguez sees what she calls the “invisible scars” of pediatric transplant patients.

Kids are often hospitalized for months while they wait for a transplant, then recover from a transplant, or suffer transplant-related complications.

It’s her mission, she said, to help patients and families cope with the fierce emotions and the hardships that come with receiving an organ transplant.

To recognize Pediatric Transplant Week and honor the lifesaving gift of organ donation, Rodriguez wanted to do something visible, something interactive, something that kids and families can see whenever they come through the unit.

So, with support from Indiana Donor Network and Donate Life Indiana, she helped design and develop the Donate Life Wall on 9 West, where patients can drop in colored beads to signify their transplant.

On Monday, three transplant patients and their parents were on hand to drop in the first beads – Serenity Boyd (kidney), Beckett Culp (liver) and Emily Shea (kidney).

Emily, a junior at Cathedral High School, told the crowd gathered for the presentation that she received “unimaginable support” from the 9 West crew during her time at Riley.

“All of the nurses helped me during the hard days and the uncomfortable procedures, and Maddie visited me throughout my stay,” she said, as her parents, Patrick and Chris Shea, stood next to her.

“I feel so lucky, not only because of the support I received on 9 West but because the kidney I received transformed my life.”

Her surgeon, Dr. William Goggins, said he nearly walked right past the teen Monday because she looked so healthy, less than five months after her transplant.

She won’t be able to participate in ski club anymore, but soccer is still an option, Dr. Goggins told her.

While the diagnosis of kidney failure turned their world upside down, Emily’s mom said they knew they were in good hands at Riley from the beginning.

“We’re so thankful that we live in Indianapolis and that we have access to Riley with its phenomenal care,” Chris Shea said. “The nursing staff on 9 West was outstanding. Our daughter received a beautiful kidney from a generous donor, and we will forever be grateful to them and their family for this gift of life.”

Transplant surgeon Dr. Richard Mangus echoed that praise for the nurses and the team on 9 West.

“This has given us a home for our (transplant) kids,” he said. “They know where they’re going and what to expect, and they know the nurses. Some kids really are here months and months, and I appreciate those nurses who build those relationships. I appreciate you giving us a chance to bring these kids in from around the country, offer them organ donation, and help us carry it out and save their lives.”

It takes an entire team to care for and support this special group of patients and their families, Rodriguez said, including nurses, child life specialists, physical and occupational therapy, physicians and others. Other units are involved as well – PICU, stem cell, dialysis, 9 East and the operating room staff.

“Our teams are so close up here, and I wanted to get all of our nurses involved because they just love on these kids so much,” Rodriguez said. “It is an honor to have the opportunity to work with these patients and their families. Working on this project has been an absolute joy, and it would not be possible without the generous funding of Indiana Donor Network and Donate Life Indiana.”

Kellie Tremain, president and CEO of Indiana Donor Network, returned the praise, calling Riley an “incredible partner.”

“We are so grateful to Riley for their partnership and the initiative to shine a light on the miracle of donation,” she said. “We encourage all Hoosiers to sign up to become organ, tissue and eye donors. It truly does make a difference in the lives of others.”

To learn more about becoming a donor, click here.