Meet Grace: who has ‘the biggest heart’

When a congenital heart defect turned to heart failure, her family turned to Children’s Health for comprehensive care

Grace spent much of the first year of her life in the hospital. Before age 5, she had three open-heart surgeries. Since she was a baby, the care team at Children’s Health℠ has provided expert care centered around one goal: Enabling Grace to live her best life. 

For Grace, now 11, that means riding the zipline on a family vacation. (Grace’s mom, Ashley, was a self-described “hot mess,” but Grace loved it). That means wakesurfing with a little help from a close family friend. 

“We were all there watching and cheering. There wasn’t a dry eye in that boat,” Ashley said.  

Their family has been through a lot, but Grace has faced the experience with contagious optimism. The journey began at Ashley’s 13-week ultrasound, months before Grace was born.  

Hypoplastic left heart syndrome 

By the end of that ultrasound appointment, Ashley’s excitement turned to worry. The doctor gently explained that there was too much fluid in the womb. A miscarriage was likely. But they held out hope.  

At their next ultrasound, Ashley and her husband, Aaron, breathed a sigh of relief when they learned the fluid had gone down. By week 17, the fluid was no longer an issue — but that ultrasound revealed that the left side of Grace’s heart was much smaller than it should be.  

They ultimately learned that Grace would be born with hypoplastic left heart syndrome, a condition that happens when the left side of the heart does not develop properly in the womb. Children typically need three open heart surgeries before age 5 to help the heart pump blood.  

The family was living in Kentucky at the time, where Aaron was finishing his training to be an oral surgeon. At 37 weeks, Grace was born — and had her first open heart surgery at another hospital at just 11-days-old.   

“Her first six months were tough,” Ashley said. “We were monitoring her weight and oxygen levels every day. We kept her at home to keep her safe from germs. We taught her to eat and prayed for growth.” 

With a little more strength, baby Grace had her second surgery at just 6 months old. After 16 hours in the operating room, Ashley and Aaron were relieved to bring her home. But their relief again turned to fear when a serious complication brought her back to the hospital for the next three months.  

During that time, Grace's dad finished his training and planned to join an oral surgery practice in North Texas. Once Grace was well enough, the family made the move. 

“She was transported to Children’s Health on a private medical jet,” Ashley said. “And the team poured their hearts into her care from the very beginning.” 

Under the exceptional care of team members in The Heart Center, Grace was eventually able to leave the hospital, and the family started making a new home in Texas.  

Grace grew bigger – and stronger – and had her third heart surgery at age 4. From there, she kept growing into a vibrant, energetic kid who loves T-ball, dogs and music.  

“For the next five years, she was super stable,” Ashley said. “Then, out of nowhere, she was at school and started coughing up blood. And that quickly turned into a life-threatening situation.”  

A leading program in Grace’s backyard 

Tests revealed that Grace was experiencing diastolic heart failure. This means her right ventricle (the primary pumping chamber for patients with hypoplastic left heart syndrome) was struggling to adequately relax and fill with blood during the resting phase, leading to impaired cardiac output, fatigue and shortness of breath.   

Luckily, the Children’s Health Pediatric Advanced Cardiac Care Program is right in Grace’s backyard. This program provides expert and comprehensive care for children with or at risk for heart failure. Grace was admitted to the hospital, where her care team started her on medications that would help her heart pump blood and closely monitor her health.  

A care team dedicated to Grace 

Being in the hospital felt familiar for Grace’s parents. But Grace was too young to remember most of her early care, and the hospital felt scary at first. Her nurses, Child Life team and especially the music therapists help her feel at ease.  

On the best days, Grace and her favorite music therapist belted out songs from “Moana” and “Frozen.” When the nurses learned how much Grace loves dogs, they brought in therapy dogs as often as they could.   

On one of the worst days, Grace was in the cardiac intensive care unit. Her family prayed her health would turn for the better, but they also knew that it could turn for the worse. The music therapist joined Grace’s parents and grandmother around her bed.  

“She sang this song that Grace listens to every night before bed, and we all had tears streaming down our faces,” Ashley said. “And I know it sounds like a sad moment, but it really wasn’t. It was this sweet, precious moment that we will all carry with us for the rest of our lives.” 

Music therapy, child life and pet therapy – services that make life easier for kids and families experiencing the unthinkable – come at no-cost to patient families and rely on philanthropic support.    

“For us, it's what made hospitalization a positive experience instead of a negative, heart-wrenching one,” Ashley said. “These team members helped Grace and our whole family find joy in some really dire circumstances.”   

Growing stronger 

The days kept coming and Grace’s health became more stable. Her cardiologists closely monitored her heart, while physical and occupational therapists helped her start to build back her strength. They tailored Grace’s therapy to her unique needs — especially toward the end of her stay, when Grace was feeling stronger, and her care team learned that she loved T-ball.  

“They brought in a ball, a bat and a tee as part of her therapy in the ICU, and Grace loved every minute. It was a moment that was so sweet to watch,” Ashley said.  

After multiple hospitalizations and procedures last year, Grace’s heart was working well enough that she was finally able to go home.  

Living her best life 

These days, Grace’s care team still keeps in close touch through regular appointments and an app that monitors her vitals. That remote monitoring and knowing Children’s Health is just a call away helps her parents worry a little less.  

“It’s incredible we have a hospital like this so close to home. Honestly, if we didn’t, we would have to move,” Ashley said. “It’s comforting to know that they’re always there and will do whatever they can to help Grace.” 

Grace is now back in school and taking advantage of every opportunity she can: visiting her cousins, playing with her three siblings, singing and swimming. She loves her little dog, Minnie, and she walks through the world with resilience and a contagious smile.  

“Being around her, you would never know how much she has endured,” Ashley said. “She’s strong. She’s brave. And she makes you better by just being around her because she has the biggest heart.”

Meet more Children's Health patients

Read more patient stories like Grace's and meet our Patient Ambassadors to learn how Children's Health makes life better for children.

How you can help

Help kids like Grace by exploring our ways to give or by giving today!