Merritt’s Story: Heart Patient Meets Pro Volleyball Player

A Name, a Connection and a Visit to Remember

Sometimes hope appears in the most unexpected ways. For the Squire family, it started with a search for the perfect “M” name for their daughter. A Nebraska volleyball match happened to be playing in the background that night, and it sparked a moment they still remember.

“It was a few weeks before she was born, and my husband came into the room and he’s like, ‘What about Merritt?’” recalls Mari Jo Squire. “At first, I said no. But the next day I thought, ‘I love the name Merritt.’ It’s unique, and it reminds us of one of our favorite volleyball players.”

They never imagined that their decision would one day lead to a heartwarming meeting with the athlete herself, Merritt Beason, a former Nebraska volleyball All-American who now plays professionally for the Omaha Supernovas. They also never expected that moment to happen inside Children’s Nebraska, where their daughter, 2-year old Merritt, is awaiting a heart transplant and showing the world just how strong she is.

Merritt’s Journey with Dilated Cardiomyopathy

Merritt was born seemingly healthy, but at just two weeks old, her parents noticed she was having trouble breathing and thought she may have contracted respiratory syncytial virus (RSV). Trusting their instincts, they sought medical attention and they received an unexpected and life-changing diagnosis: Merritt was in heart failure. Genetic testing revealed the cause was dilated cardiomyopathy, a condition where the heart's main pumping chamber becomes enlarged and weakened, making it difficult to pump blood effectively.

Merritt’s care began at Children’s Criss Heart Center, where the expert cardiac team guided her through a medicine regimen that allowed her to thrive at home for just over a year. Around that time, she came down with RSV, which decreased her heart’s function and prompted the family to return to Children’s for advanced care.

“Her heart function had essentially dropped to severely depressed function,” explains Jason Cole, MD, medical director of the Advanced Pediatric Heart Failure & Transplant program. “The decision was made by our multidisciplinary transplant team that she required cardiac transplantation for her next phase of care.”

To support her heart until a donor becomes available, Merritt received a Berlin Heart, a type of ventricular assist device (VAD). Led by Dr. Cole and Camille Hancock Friesen, MD, surgical director of the Advanced Pediatric Heart Failure & Transplant program, the cardiac team, placed the VAD, which acts as a mechanical pump to help circulate blood. The VAD helps the body get the oxygen and nutrients it needs while reducing the heart’s workload.

Merritt has made significant strides since receiving the VAD, reaching developmental milestones she hadn’t been able to achieve before, including walking in the unit for the first time, standing unassisted and tolerating more feeds. Because the VAD must remain connected to its machine at all times and has a short battery life, her independent mobility is limited. That’s why a highly trained team of nurses, advanced practice providers and rehabilitative therapists work closely with her to ensure she can safely participate in therapies and experience as much freedom as possible.

Support Through the Pediatric Heart Transplant Journey

Waiting for a heart transplant is a journey filled with complex emotions. For the Squires, who live in the Des Moines, Iowa area — three hours away from Children’s — it has meant navigating life in the hospital while trying to maintain a sense of normalcy for their family.

“It is the most challenging feeling to try and navigate,” Mari Jo shares candidly. “The hardship of being here for 10 months is significant. Merritt and I are here, and my husband comes to visit us in the hospital on the weekends, but he and I hardly see each other. And we’re always praying to keep her healthy, but you also don’t want to pray for a heart, because it means someone else is losing their little one and having the worst day of their life in order to give my daughter a new life. That’s really hard to navigate as a parent. We could be here six more months, but that means the other parents get six more months to be with their child. It’s a very weird place to be mentally. Any parent in our position knows how incredibly hard it is, but at the end it will be rewarding.”

Throughout this difficult time, Children’s multidisciplinary team has provided not just advanced medical care but compassionate support. From social workers and rehabilitative therapists to dietitians and nurses, the team rallies around the family, helping with everything from housing at the Carolyn Scott Rainbow House to ensuring Merritt meets her developmental milestones and more.

“I wouldn’t be where I am mentally if it weren’t for the staff at this hospital,” says Mari Jo. “They not only support Merritt, but also our whole family, and that is huge for us.”

A Visit That Sparked Joy

When professional volleyball player Merritt Beason heard about the little girl named after her who was awaiting a heart transplant, she knew she wanted to meet her. The day she visited Children’s became a moment of pure joy for the Squire family.

“I was so excited when I found out that I was going to be able to come and meet her and her family,” Beason shares.

Her visit gave the family a welcome break, letting them relax and enjoy a conversation about volleyball and life.

For Beason, meeting her young namesake was a deeply moving experience.

“These are the things that really ground you, and almost humble you in a way, to remember that little girls and kids are out here fighting for their lives every single day,” she says. “To have a little girl sharing the same name as you, who is so strong and fighting every single day, is just something you can’t put into words, and definitely will be a big inspiration for me.”

For Mari Jo, the visit offered a precious sense of normalcy. “Merritt was very easy to talk to. You have this volleyball player that is at such a high level... and then she walks into the room and she's just like another person,” Mari Jo says. “It was fun. I was happy.”

Why Choose the Criss Heart Center at Children’s Nebraska?

Merritt’s heart transplant story highlights the exceptional care provided by the Advanced Pediatric Heart Failure & Transplant team at Children’s. As the region's only pediatric hospital offering this level of specialized cardiac care, and the first in the state offering a pediatric VAD program, the Criss Heart Center provides hope for children with complex heart conditions.

“Patients don’t need to travel far to receive the highest level of pediatric heart failure care,” says Dr. Hancock Friesen. “We offer the most advanced therapies for pediatric heart failure patients right here in Nebraska. Our entire team, including surgeons, cardiologists, nurses and other specialists, is fully involved in each patient’s care. Together, we collaborate to develop the best possible care plan for each child.”

Our multispecialty team includes experts from Children's Cardiology, Cardiothoracic Surgery, Cardiac Critical Care, Cardiac Anesthesiology and other supportive pediatric specialties. The team ensures the family is informed and supported every step of the way.  

“We support not only the patient but also the family as best as we possibly can through that process,” Dr. Cole says. “The goal is to make them as strong as possible and to make life as normal as possible for them.”

That dedication to the whole family is what makes moments like Merritt Beason’s visit possible. “Opportunities like these give our families a chance to take a step back, take a breath and to enjoy the moments while they’re here. That’s what it’s all about,” Dr. Cole adds.

Expert Care for Your Child’s Heart

Children’s Criss Heart Center provides expert care for children with congenital heart disease, heart failure and other complex cardiac conditions. To learn more about our Advanced Pediatric Heart Failure & Transplant program or to schedule an appointment with one of our specialists, please contact us today.

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