Charlotte Fire Family’s Fight for Jessie’s Special Heart
Published on March 25, 2026
Jessie, now 8 years old, continues to thrive while living with a congenital heart defect, embracing life with the same energy as any other child her age.
It was supposed to be a moment defined by joy.
For Brooke and Thomas Spence, the birth of their daughter Jessie marked the beginning of a new chapter, one filled with the excitement and uncertainty that comes with becoming first-time parents. But within 24 hours, that chapter took a sharp and terrifying turn.
Jessie was born appearing healthy. There were no immediate alarms, no urgent calls for intervention. But something wasn’t sitting right with Thomas, who had just graduated from Charlotte Fire’s recruit school one month earlier.
He had spent months immersed in EMT training, learning how to recognize the subtle signs that something might be wrong. Now, standing in a hospital room as a father instead of a firefighter, those lessons began to surface.
Just days old, Jessie undergoes critical care following her diagnosis, a moment that marked the beginning of her fight and her family’s journey.
“I remember looking at her fingertips,” Thomas said. “They never really picked up. They stayed kind of bluish, kind of purple.”
He questioned himself in those early hours, caught between instinct and denial. The doctors hadn’t raised concerns. Everything was supposed to be fine. And like any parent, he wanted to believe that.
“You’re trying to convince yourself that nothing is wrong,” he said. “It’s your baby. Everything is good.”
As Jessie was being prepared for discharge, a pediatrician took a closer look. A pulse oximeter revealed low oxygen saturation. The discoloration Thomas had noticed wasn’t just a passing concern. It was a warning sign.
Within moments, everything changed.
Jessie sleeps peacefully during her early recovery, a quiet contrast to the complex medical care happening behind the scenes.
Jessie was diagnosed with a severe congenital heart defect. She was flown from Gastonia to Levine Children’s Hospital, where her fight for survival began almost immediately.
At just six days old, she underwent her first open-heart surgery.
For Brooke, a nurse by profession, the experience was disorienting in a different way.
“You kind of lose that nursing background,” she said. “You turn into mom.”
The clinical knowledge she carried into the hospital faded under the weight of fear and emotion. This wasn’t a patient. This was her child.
“She was my first,” Brooke said. “And it was like everything else goes out of your brain. You’re just trying to get through it.”
Thomas, despite his recent training, faced a similar emotional conflict. The knowledge that helped him recognize something was wrong also forced him to confront the reality of what that might mean.
In the hospital, Jessie rests between procedures, surrounded by constant care as doctors work to stabilize her condition.
Brooke initially reassured him, leaning on the belief that everything would be okay. But as the diagnosis became clear, the gravity of the situation set in.
Doctors told them something that would stay with them forever: if Jessie had gone home that day, she would not have survived more than a few days.
The first surgery was only the beginning.
A week later, Jessie required an emergency procedure. In total, she spent 47 days in the hospital during that initial stretch of her life. Tubes, monitors, and constant medical attention became part of her world before she ever had a chance to experience anything else.
When they were finally able to go home, the care didn’t stop.
Sitting in front of a Charlotte Fire engine, Jessie represents the strength behind the mission to support children with “special hearts.”
Jessie required daily monitoring. Her weight had to be tracked closely. Her oxygen levels were checked regularly. Home health nurses became an extension of the family, ensuring she remained stable.
That level of care came at a cost, one that many families would struggle to manage.
But the Spence family wasn’t alone.
Thomas and Brooke Spence stand with their children, Jessie and Tate, at Firehouse 42, where their journey has been supported by both family and the fire service.
They were supported by The HEARTest Yard, an organization dedicated to helping families of children with congenital heart defects. Through its programs, the foundation provided the resources Jessie needed without placing additional financial strain on the family.
“They helped cover key pieces of that care, including the equipment and support we relied on at home,” Brooke said.
For Thomas, the impact was immediate and lasting.
“That support meant everything,” he said. “Those nurses, the equipment, the care. It allowed us to focus on her instead of worrying about how we were going to manage it all.”
Jessie’s journey continued.
At one year old, she underwent her third open-heart surgery. Years later, she would have additional procedures, including a recent heart catheterization in December.
Through it all, she has grown into an energetic eight-year-old.
The back of the Charlotte Fire HEARTest Yard shirt highlights the mission behind the effort, supporting families like the Spences through awareness and fundraising.
“She does cheerleading, gymnastics,” Thomas said. “You wouldn’t know she had a heart defect unless you saw her scar.”
The scar has a name in their household. They call it her “zipper,” a term meant to soften something that carries so much weight.
It’s part of how they’ve helped Jessie understand her story without overwhelming her.
“I don’t want her worrying about what’s going to happen when she’s 25 or 30,” Thomas said. “Let her be 8.”
For years, that approach worked. Jessie understood that she had a “special heart,” but the full implications of that didn’t fully register.
That began to change as she got older.
Her most recent procedure brought new questions.
“Why do I have to have this?” she asked. “Why don’t my friends have one?”
Those are questions no parent is fully prepared to answer.
Thomas and Brooke Spence share a moment together, reflecting the strength it takes to navigate their daughter’s journey and support others along the way.
“You try to be as honest as you can,” Brooke said. “But you also have to explain it in a way she understands.”
That awareness also began to take shape at home, especially alongside her younger brother, Tate.
During Brooke’s pregnancy, Jessie would ask questions that revealed both curiosity and concern.
“Is he going to have a special heart too?” she asked.
For Brooke and Thomas, those moments carried weight. They wanted to be honest, but they also wanted to protect her from fear they themselves were still learning to manage.
Tate was born heart healthy, something the family does not take for granted. But Jessie’s questions did not end there.
“Why do I have to go to the doctor and he doesn’t?” she asked.
It is in those moments that the reality of her journey becomes clearer. Not just for Jessie, but for her parents, who are tasked with explaining something that has no simple answer. It’s a balance between truth and protection. Between preparing her and preserving her childhood.
“She’s becoming more aware,” Thomas said. “But with that awareness comes understanding. We just try to help her see that we’re doing this so she can keep doing the things she loves.”
In the middle of their challenges, the Spence family found something else through The HEARTest Yard.
Community.
Jessie stands in focus as her family looks on, a reminder of the strength and resilience that defines her journey.
Events like 5Ks and gatherings brought together families facing similar situations. For Jessie, it meant seeing other children just like her.
“She meets friends,” Brooke said. “She sees other kids with special hearts and realizes she’s not the only one.”
For Thomas, those moments carry a different kind of significance.
“You walk into those events, and you already know you have something in common with everyone there,” he said. “There’s an immediate connection.”
That sense of belonging is one of the reasons the Spence family has chosen to speak openly about their experience.
Not every family knows what resources are available. Not every parent realizes how many children are living with congenital heart defects.
By sharing Jessie’s story, they hope to provide something they once needed themselves.
“You hear something is wrong with your child, and you think the worst,” Thomas said. “But then you see kids like Jessie running around, doing flips, living their lives. It gives you hope.”
That same sense of purpose has extended into the Charlotte Fire family.
Wearing shirts designed to support The HEARTest Yard, Charlotte Fire members help turn Jessie’s story into a message of hope for other families facing similar challenges.
Thomas was still new to the department when Jessie was born. He had just completed recruit school and was stepping into a career that demands both physical and emotional resilience.
What he found during those early days left a lasting impression.
“I remember guys from the truck coming to the hospital,” he said. “Stopping by, sitting with us, asking if we needed anything.”
It wasn’t a one-time gesture. It was consistent.
“That’s when I realized this wasn’t just a job,” Thomas said. “This was a family.”
Eight years later, that family continues to stand beside them.
Charlotte Fire members have supported the Spence family’s efforts to give back to The HEARTest Yard, including the creation of a specialized T-shirt designed to raise funds and awareness.
Charlotte Firefighter Denice wears the HEARTest Yard shirt, helping extend the impact of Jessie’s story beyond her family and into the community.
For Brooke and Thomas, the gesture carries deep meaning.
“It’s special,” Brooke said. “It’s not something they have to do. But they’re doing it anyway.”
The shirts represent more than a fundraiser. They represent the intersection of two families. One built through blood, and one built through service.
Today, Jessie continues to grow, to learn, and to live a life that once seemed uncertain.
She still has questions. She still faces challenges. But she also has a support system that extends far beyond her immediate family.
From the doctors who performed her surgeries, to the nurses who cared for her at home, to the families they’ve met through The HEARTest Yard, and the firefighters who stood beside them from the very beginning.
Charlotte Fire members stand together at Firehouse 42, showing their support for the Spence family and helping raise awareness for children with congenital heart defects.
Each piece has played a role in her story.
And that story is still being written.
For the Spence family, sharing that story is about more than reflection. It’s about impact.
It’s about the next family sitting in a hospital room, facing the same fear and uncertainty they once did.
It’s about showing them that there is a path forward.
Jessie smiles at Firehouse 42, a reflection of her strength and the journey that continues to inspire both her family and the Charlotte Fire community.
And it’s about ensuring that organizations like The HEARTest Yard can continue to provide the support that made such a difference in their lives.
Because for Jessie, and for so many others, that support can mean everything.