A heartfelt milestone

Meet Daija

When it comes to heart transplants, “Our program is awesome,” said Stefanie, nurse coordinator in transplant and cardiac therapies. “We continue to grow and help kids who, in the past, may not have had these options or may not have had the same chance at a new heart.”

Stefanie’s excitement is contagious as she talks about Children’s Mercy’s heart transplant program and the milestone behind it: 75 children given a new chance with a new heart. The program is a collaboration between the Brendan Tripp Elam Transplant Center and the Ward Family Heart Center, where teams closely coordinate care for kids before, during and after transplant.

The recipient of the 75^th heart is 4-year-old Daija, who traveled with mom from Abilene, Kan. to receive Children’s Mercy care.

A challenging journey for Daija

“Her situation is pretty unique,” says Stefanie. “Daija was diagnosed with congenital atresia of the left main coronary artery and aortic valve stenosis. Her heart condition was undetected for some time, then when she started having symptoms and went in for testing, her heart arrested in the cardiac catheterization lab.”

From there, Daija spent weeks on ECMO and life support. Later, she received a Berlin Heart — a mechanical heart pump device — to keep her kidneys, liver and heart healthy as she waited for a donor. Daija was placed on the transplant list on June 15 and, just weeks later, received her new heart on July 22.

Daija’s mom and grandma found comfort in staying close by at the Ronald McDonald House near Adele Hall, giving them a chance to have some routine but be there when Daija and the care team needed them most.

“One of the things Daija’s mom and care team were so helpful with was supporting her to regulate her emotions during the many challenges that can come with before, during and after care,” says Stefanie. “They would say ‘oh these are so cute!’ or ‘how pretty’ about the tubes that connected her Berlin heart, often a bother to a toddler and her sensory needs. They did an awesome job normalizing something that definitely wasn’t.”

Daija is autistic and largely non-verbal, particular about foods and sometimes has trouble communicating her frustrations or anxiety.

“One of our amazing nurses, Anna Strusz on 4 Sutherland, taught Daija and her mom sign language,” says Stefanie. “On her shift and in any extra time, she spent hours reading, signing and engaging her. The family says it’s been a gamechanger,” shares Stefanie.

Unlocking brighter futures through transplant

Today, Daija is doing well. She is getting a permanent G tube, trying new foods and using some new words, while her mom is also being tested for heart conditions because of Daija’s diagnosis. For Daija and her family, the 75th heart transplant milestone is already showing up in their lives as more precious time together, more steps forward and more reasons to hope.

That is what makes reaching 75 heart transplants so meaningful for all of us at Children’s Mercy . Each transplant represents a child who has a new chance at life, a family supported through an incredibly difficult journey and the gift of organ donation honored through expert care.

Since we established our Heart Transplant Program in October 2014, the program has continued to grow, from the first heart transplant in 2015, to the first heart/liver transplant in 2022, to the 50th heart transplant in 2023 and now the 75th in 2026. With two new doctors joining the team and eight transplants completed already this year, the Heart Transplant Program is continuing to advance care so more kids like Daija have the chance for a brighter future ahead.