From the bottom of their hearts, they say thank you

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

Sydney Deaver was only a year old when she first came to the big heart party at the NCAA Hall of Champions in Indianapolis.

At that time, she was just a few months removed from heart transplant surgery at 5 months old.

Now a feisty 5-year-old, she was back this weekend with her parents, David and Ashley, and dozens of other heart transplant recipients, to celebrate the holidays and the gift of life.

It’s been four years since the last Heart to Heart Christmas Party, organized by the transplant team at Riley Children’s Health. COVID-19 forced the cancelation of the celebration for several years.

“It’s amazing to be back again,” said pediatric cardiac transplant coordinator Debbie Murphy. “The NCAA is just so welcoming, and so many people are excited to be back and see each other.”

People like Leighton Akins, now 23, who has the double distinction of receiving two heart transplants.

Saturday’s party, championed and hosted by transplant cardiologist Dr. Robert Darragh, brought together about 150 people, representing 30 to 40 families.

There were many new faces at the party this year. Makayla Owens received her hero heart in 2020, so she had never been to the event. Dressed in her finest Christmas dress, the second-grader attended with her mom, Mariah Gavia-Locke, and posed for a photo with cardiologist Dr. John Parent.

“She is doing so well,” her mom said with pride.

The party, which was started by a couple of moms in a private home three-plus decades ago before expanding to a church, is the perfect opportunity for patients and families to connect with others who are on the same journey, said transplant coordinator Maegan Boehm.

“It’s important to see a room full of people who care about someone who has gone through this and shared the same hopes and fears,” she said.

While the kids and young adults were out exploring the Hall of Champions with NCAA staff, parents took time to share their personal stories, along with their gratitude for the Riley team.

Patrick and Samantha Kelly’s daughter, Sawyer, 9, was diagnosed with hypoplastic left heart syndrome and was transplanted when she was 9 months old.

“She spent just about her whole first year in the CVICU,” Samantha Kelly said. “She was very, very sick – a couple rounds of ECMO, a stroke, all the things. But now she is a happy, healthy third-grader. She rides horses, and she just started piano and choir.”

Considering how sick she was her first year, the Kellys say they have been very fortunate not to have had any major problems since transplant.

“We are incredibly grateful for the whole Riley team,” Samantha said. “They’ve been by our side through thick and thin. They’ve laughed with us, cried with us. They still celebrate all the milestones with us. We couldn’t be at a better place.”

Kevin and Trinity Ginther’s daughter, Hannah, is also 9 and was diagnosed with HLHS as well. She was transplanted at the age of 3½.

“We are blessed to be here,” her dad told the group. “Hannah’s been excited about this for weeks now. She got braces this week, and my wife cried. It’s those moments you sometimes take for granted, but we didn’t know if those moments were going to happen,” Ginther said.

And yet today, their daughter is thriving, he said.

“She is loving school and her friends. She is playing volleyball and loving that, and she will play basketball this year.”

It’s all because of generous donor families and the care and expertise of the Riley team, parents in the room agreed.

“You did such a good job taking care of our whole family,” Victoria Neumann told the Riley clinicians and support staff. “I know I can come to you with questions and celebrate the successes we have.”

Neumann’s daughter, Emma Sully, 11, received her new heart one year ago this month, and other transplant moms have helped her navigate the first year.

“I’m starting to feel like I have a handle on it,” Neumann said.

Learn more about becoming an organ donor.

The cardiovascular program at Riley Children’s Health is ranked among the best in the country by U.S. News & World Report.

Photos by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org