Filling hearts with Christmas cheer

By Maureen Gilmer, Riley Children’s Health senior writer, mgilmer1@iuhealth.org

In the beginning, there were just two or three families who came together for a special Christmas party, first held in a mobile home.

It was a selective list because those attending were connected by a common thread – pediatric heart transplant.

Joan and Creager Smith remember feeling frightened and alone in the early days after their daughter Leah received her first heart transplant as a newborn 33 years ago at Riley Hospital for Children.

Pediatric heart transplants were a very big deal back then. Of course, they still are, but there are more of them today, and social media offers a greater chance for connection among parents and patients.

“We felt so alone with this really big, scary, medical thing happening,” Joan said. “We wanted to meet the few other families who were already going through this to seek support and advice.”

Among the families they met early on were Paul and Collette Leichtnam and their son, McKenzie, born in 1990.

The Leichtnams attended that first Christmas party – memories are fuzzy whether it occurred in 1991 or 1992. From there, it moved to a church, then a restaurant, another church and a couple other spots before it landed at its current location – the NCAA Hall of Champions in Downtown Indianapolis, where it has been held for the past two-plus decades. This year’s party is Saturday, Dec. 7.

For most all of those years, Riley transplant cardiologist Dr. Robert Darragh and his wife, Annie, have been involved, first opening their church to the gathering and then moving with the party down to the NCAA, which volunteered to sponsor the event after seeing the impact it had.

“It started out so small and just grew and grew,” Collette said, just as the success of Riley’s transplant program would grow.

But no matter the numbers, the goal was the same.

“We just wanted to keep in contact with the families, checking in on each other and making sure these kids knew each other,” Collette said. “It was very comforting.”

In those early years, there were homemade stockings for every child, toys, games and treats. But the true gift was the sense of community, both Collette and Joan said.

“The support group and networking was what we wanted the most,” Joan said.

“Our goal was to bring those families together so they could see that they’re not alone. You have to understand how overwhelming it was to be told your child needs a heart transplant – especially back then – and to go through that process and to raise that child. We needed to be with other people who’ve experienced this.”

And the children needed to know that there were others like them as well.

“The impact we had on the families wasn’t about the gifts,” Joan added. “It was about bringing those kids together. Many of those children created lifelong friendships with each other. For those kids to grow up and talk to another child who was going through the same thing was invaluable.”

Leah Smith, 33, remembers that feeling well. The two-time transplant recipient (both performed by Dr. John Brown) said as a little kid, it was difficult to understand the concept of another person’s heart beating inside her. Her parents told her she had a guardian angel – her donor – who gave his heart to her.

The parties and other get-togethers that their Heart to Heart support group planned gave her a chance to see others who’d had the same experience she had, who bore the same scars.

“It was good knowing I wasn’t alone in what I was going through.”

McKenzie Leichtnam was like a brother to her, while she and Jared Robinson connected over music, becoming close friends.

“The party was how we stayed connected in an age before social media,” she said.

She remembers playing with all of the kids and seeing Santa, played by an adult heart transplant recipient, Wylie Embrey.

“There were a few Santas over the years, but our signature Santa was Wiley,” Leah’s mom said. “He was a kid at heart. He and his wife were a big help at the parties.”

Both McKenzie and Jared have since passed away, leaving an emptiness in the hearts of their family and friends. But Leah, who remained active in the annual Christmas party up until 2015 and spoke to school groups over the years, channels her grief into helping others through a Fort Wayne transplant support group she runs.

She was thrilled to reunite with several of her care team at the last Christmas party she attended several years ago, including Dr. Brown and retired cardiologist Dr. Randy Caldwell.

“The party is such an important way for families to connect outside the hospital, not only with each other but with the staff,” she said.

Her mom remembers how involved the staff at Riley were.

“They were just fantastic. The party brought the transplant staff to these families on a different level than they experienced at the hospital,” Joan said.

“I know it’s a cliché that Riley is your family, but it is so true,” she added. “Riley became our family, the transplant team became our family, and they proved that by being so involved in our Heart to Heart group, on top of the Christmas party.”

McKenzie’s sister, Kelsey, remembers as a child and a teen how important it was for her brother to feel “normal” around others who were on the same transplant journey.

“He started to bring his friends to the party, and that opened him up to be able to talk about what he’d been through,” she said.

Known as the “life of the party” wherever he went, he was “an all-around cool kid,” friends and family shared.

McKenzie, who was transplanted at 13 days old at Riley, passed away in his sleep 13 years ago at the age of 20. Kelsey believed in the cause of organ donation so strongly that she went to work for Indiana Donor Network.

Debbie Murphy, who became very close to the family as transplant coordinator, has a soft spot in her heart for McKenzie and all the young patients she has helped over decades in her role.

“He was just a delightful little boy and young man,” she said in an earlier interview. “Just a sweet soul.”

Kelsey returned to the Christmas party by herself the year that her brother died.

“It felt very cathartic to go and to be welcomed by the families because we had that bond,” she said. “There’s something special about a group of people in a room having that instant peace, knowing you’ve all been in the same boat.”

While no longer involved in the annual party, both the Smiths and the Leichtnams are pleased that what they started more than three decades ago is still bringing heart transplant patients together.

“So many people made the parties successful. Debbie Murphy and the other coordinators, the transplant doctors and nurses, and the social workers at Riley all played a part,” Joan said.

“And without realizing it, we were building traditions. The Christmas stockings became part of the party. Every recipient had a stocking that we hung with their name on it. Over the years, many of the kids would go right to the stockings. Unfortunately, we lost kids during the years as well. To help with that process, we did not remove their stocking. We added an angel by their name.”

Paul and Collette reconnected recently by chance with a couple of people who were among their early supporters. One was a nurse and the other a clown.

“All those years ago, I hired clowns, magicians, balloon makers and face painters,” Collette recalled. “This year at our neighborhood garage sale, this lady came up who was shopping for her neighbor kids, and I just recognized her voice, but not her face.”

Then it hit her.

“Is your name Bubbles?”

Sure enough, the woman used to perform as Bubbles the Clown at the heart party.

“I didn’t recognize her without her clown makeup,” Collette said with a chuckle.

She told her the same thing she has said to everyone involved in hosting the annual party: “Thank you for bringing joy to those kids.”