Meet Lilly

Some journeys begin with a single step. Lilly’s began with a moment of silence.

At just 16 weeks pregnant, Marissa, of Wichita, Kan., went in for what should have been a routine prenatal appointment. When it was time to hear the baby’s heartbeat, the familiar sound didn’t come. After trying again, and even replacing the batteries on the device, the care team moved to an ultrasound to find it.

There it was, strong and steady. Relief washed over the room. Everything seemed okay. But about a week later, the phone rang.

“We got a call from my doctor, who has been my doctor for our last two kids,” Marissa recalled. “I had never heard her voice on the phone before, so her calling was really weird…and my heart dropped in that moment.”

Marissa’s doctor had noticed a cyst on the back of the baby’s neck, so more testing was needed. An earlier-than-usual anatomy scan followed, bringing the family to a new level of uncertainty.

And then, the answer. It wasn’t just the cyst. Baby Lilly had hypoplastic left heart syndrome (HLHS), a complex congenital heart defect in which the left side of the heart is underdeveloped.

From that moment forward, the pregnancy and the family’s life became a journey measured in miles, moments and unwavering hope.

A journey that began before birth

While the diagnosis first came through maternal-fetal care in Wichita, it quickly became clear Lilly would need specialized care even before she was born. Marissa was referred to the Elizabeth J. Ferrell Fetal Health Center at Children’s Mercy, and she and Jordan began regular visits for prenatal care, monitoring and planning.

Month by month, the family prepared not just for Lilly’s birth, but for immediate, highly coordinated heart care for her the moment she arrived.

As Lilly’s due date approached, her parents Marissa and Jordan, along with her older siblings, Mariah, Londyn and Landan, temporarily relocated to Kansas City to be close to the care team. They stayed together, in close proximity to the hospital, at the Ronald McDonald House while Marissa attended frequent appointments in the days leading up to delivery.

“I wanted everything to go as naturally as possible,” Marissa said. “But I wanted to do whatever was best for Lilly.”

To ensure the right specialists were in place, Marissa was induced just before her due date. Lilly was born at Children’s Mercy, already surrounded by the team who would care for her next.

Small heart, big fight

 “Children with HLHS typically require a series of three open-heart surgeries performed at different stages of childhood,” said pediatric cardiologist Rabah Daoud, MD, Children’s Mercy Wichita.

For Lilly, that meant her journey in the Ward Family Heart Center at Children’s Mercy began almost immediately. At just 7 days old, she underwent her first heart surgery. She spent nearly three months in the hospital after birth, including nearly three weeks intubated following surgery — time her parents could only wait, hope and trust.

“She had to be intubated for 19 days… and we couldn’t hold her,” Marissa shared.

And that was only the beginning. Lilly’s journey over the past two years has included multiple surgeries, complications and frequent hospitalizations — each one requiring the family to travel back and forth between Wichita and Kansas City, sometimes with little notice.

After one surgery, the family was able to return home just before Christmas. Less than 24 hours later, Lilly became critically ill. She was flown back to Kansas City by the Children’s Mercy Critical Care Transport team, ensuring she could get the care she needed as quickly as possible. The logistics alone were daunting. The emotional toll, immeasurable. Still, through long nights, unexpected setbacks and time away from home, the Harris family found a way forward.

“What got us through,” Marissa said, “is something I call ‘fighting with blessings.’ When things are hard, I try to look at all the positives and how it could be worse.”

Even amid uncertainty, moments of light continued to break through.

With the help of two loving grandmothers, Lovie and Nana, who stepped in to care for Lilly’s siblings, the family created rhythms that allowed them to stay connected, whether in Kansas City or Wichita.

They were never alone. Extended family, friends, church members and other parents of medically complex children supported them in many ways by caring for the kids, helping with school and activities, watching their home and dog, Lady, and sending meals, encouragement and prayers. Their village helped carry the family through when they needed it most.

Inside the hospital, Lilly became known not just as a patient, but as a familiar, joyful presence. Care teams greeted her by name as she arrived, remembering not only her medical needs but her personality.

Those relationships made all the difference to Lilly’s family, who knew they could trust this team to care for their little girl through every admission, recovery and return home.

A little girl who continues to shine

Today, Lilly is doing what 2-year-olds do best — growing, exploring and discovering the world in her own way. She is learning to walk, finding her voice and developing a personality that keeps her family smiling.

“She’s really thriving,” Marissa said. “She kind of skipped crawling and decided to start walking and trying to run… and she’s definitely got a little personality.”

Because of vocal cord challenges, Lilly communicates in a unique and beautiful way — through sign language, sounds and determination. At home, she laughs with her siblings, watches her favorite shows and celebrates milestones that once felt uncertain.

At first glance, you might not see the complexity of her journey right away. But her family celebrates every step she takes, knowing how much she has already overcome.

Bringing care closer to home

For families like Lilly’s who are navigating complex conditions, care doesn’t end when they leave the hospital.

While Lilly returns to Children’s Mercy in Kansas City for highly specialized procedures, much of her ongoing heart care happens in Wichita where she receives care in the Children’s Mercy Wichita Cardiology clinic by her pediatric cardiologist, Dr. Daoud.

With the opening of the new Children’s Mercy Wichita location, that connection is only growing stronger, bringing expanded access to pediatric specialty services, advanced cardiac imaging and more coordinated care closer to home.

“Lilly has successfully completed the first two stages of her surgical repair and is now awaiting her third,” said Dr. Daoud. “Thanks to the comprehensive cardiac imaging and specialized care now available here in Wichita, she has been able to receive the advanced testing and close follow-up she needs much closer to home, rather than traveling several hours to our main hospital.”

That accessibility has made a meaningful difference for Lilly and her family. “By providing specialized care locally and monitoring her closely, we have been able to identify concerns early, manage them promptly and help prevent multiple hospital admissions,” Dr. Daoud said. “Reducing the burden of travel has also allowed Lilly and her family to focus more on what matters most, helping her thrive.”

The close collaboration between Lilly’s teams in Wichita and Kansas City helps ensure her care remains consistent, coordinated and centered around her needs, bringing a sense of steadiness to a journey that has often required so much movement.

Through it all, Lilly and her family keep “fighting with blessings” and celebrating all the ways their little girl continues to defy expectations, one heartbeat at a time.