HOME IS WHERE THE HEART IS: How three boys became fast friends in the unlikeliest of settings

From their perspective, it’s no big deal. 

They’re just three neighbors who happen to be best friends. Like most elementary school-age boys, they love joking around, superheroes and video games – why wouldn’t they click? But for their families, their bond is nothing short of extraordinary. 

That’s because their neighborhood – the place that they have lived for the last three months of their very young lives – is the 3rd Floor of a children’s hospital. And though each one of these boys is surrounded by love, the truth is they’re surrounded by even more wires and tubes. Medically speaking, they were all born with hypoplastic left heart syndrome, a birth defect that prevents the left side of their hearts from forming properly. But strip away the science, and the diagnosis is simple: These boys are all suffering from broken hearts.

Collectively the trio – Bennett Gulyas (6), Jackson Bell (6) and Marcelino Leon III (9) – have 21 years between them, 10 surgeries and three of the best-decorated hospital rooms you’ve ever seen. The medical staff at the MUSC Health Shawn Jenkins Children’s Hospital dubbed them “The Three MUSCeteers” because they are inseparable.

But if not for a unique statewide approach to pediatric cardiology and a little sprinkle of fate, these three boys wouldn’t be sitting right here, in the game room, unwittingly making what is anything but a normal life seem almost normal.

 

Back to school

It’s an overcast morning in late May, and Bennett beams as Child Life specialist Bethany Campbell hands him a brand-new Rubik’s cube. In the package, it’s perfect, all six sides solved. The 6-year-old gives a devious smile and in one quick motion, yanks it from the box and makes two quick turns – oranges, yellows and blues now intertwined. 

“This is hard,” he says. 

Then, two more twists and his face lights up; his shaggy red hair framing his brown eyes as they sparkle with pride.

“I solved the whole thing!” he shouts. 

 

Marcelino looks on, unimpressed. But the 9-year-old doesn’t say a word. No need to burst his pal’s bubble, after all. He turns his attention back to his game of UNO!, hesitates for a second and then plays a “draw 4” card. His opponent frowns. 

“Why would you do that to your mother?” Shondrell Leon says, laughing. 

Before she can pay her penance, she’s bumped into by an energetic 6-year-old wearing a Paw Patrol fanny pack. Jackson smiles up at her, his blue-framed glasses the centerpiece of his cherub-like face. 

“You’re in my way,” he says, too excited to slow down. 

To the side, Bennett’s mom, Lindsey Gulyas, laughs and says, “Sometimes I feel like I’m back in college again, stuck at a frat house with a bunch of drunk people. Only now, they’re really little.”

Back at the table, Marcelino asks his mom a question. Suddenly, the room grows unsettlingly quiet, like the eye of a hurricane. There’s a short pause, and then Shondrell nods. At that moment, all three boys simultaneously erupt into cheers, Bennett’s arms shooting up in the air. It’s the MUSCeteers’ favorite time of day: screen time.

After rolling down the hallway like the grand marshals in a parade, they arrive at the elevator, where they will ride up to the 8th Floor Atrium to get the party started. 

Campbell, who has worked with hundreds of hospitalized kids in her career, smiles as she says, “Honestly, I’ve never seen anything like this. The bond they have with one another is incredible. And they just run around the unit like they own the place. They’re all so comfortable with staff – and everybody loves them.” 

 

Triumph out of tragedy

Though their relationships are still relatively new, the boys’ bond runs deep. Sure, they share an undeniable love of Captain America but more critically, all three are designated 1A – the United Network for Organ Sharing’s top designation for those who are in the greatest need of an organ – on the transplant list. That means that of the roughly 3,400 people in the United States currently waiting for hearts, they are near the very top.

 

“For sure, it’s great to be one of the first people in line, but …” Lindsey says, before her voice trails off. She doesn’t need to say the rest. Because it’s hanging there, her words crystal clear for all to see: They are there because their children’s situations are dire. 

 

On paper, it might seem as if the boys are in competition for the same thing, a potentially conflicting situation to be in for anyone, much less three families who are simultaneously dealing with the biggest fights of their lives. But the determinants for transplant – things like blood type, height, weight – are different enough that it would never mean one of them would take a heart from the other. And though that is a weight off their parents’ shoulders, Marcelino’s mom, Shondrell, knows that if their son’s name is called and a heart becomes available, their family’s fortune is inevitably at the hands of another family’s tragedy.

“You try not to think about that part of it,” Marcelino’s dad, Tony Leon, says. “Because you’ll just wreck yourself if you do.”

When that bittersweet day finally does arrive, MUSC Health pediatric cardiologist Heather Henderson, M.D., will be the first one to know. As the three boys’ primary heart doctor, she’s the one who will get the call if one of them becomes what she refers to as “the primary” – the top name on the secretive list seen only by UNOS. After she hangs up, she will quickly huddle with the other doctors and transplant surgeons.

“If we think it’s a good match, things move very quickly at that point,” Henderson said. “Time is so critical with transplant. The less time the heart isn’t beating, the better.”

As for the procedure itself, what these surgeons do is incredibly complex, a skill that takes decades to perfect. To think that they can transfer a surviving heart, and it will remember to beat and pump blood perfectly for an entirely new human almost feels like science fiction. That wonder isn’t lost on the woman who sees it happen on a weekly basis.

“The whole process is magic,” Henderson said. “Sure, it’s not a cure but to think that there’s a possibility of getting more time with the people you love, I mean, this is why I do what I do.”

 

The heart of the matter

There is nothing magical about waiting, however. 

 

For those with 1A status, it can be as long as a year before that elusive phone call comes – Henderson said six to nine months is a reasonable expectation, but it really can vary – which means that for the foreseeable future, “home” for these three families from Spartanburg, Mauldin and Lexington ­is now this hospital in Charleston, South Carolina.

Just for a moment, think about what that would be like for a parent. Your house is hundreds of miles away. You’re sleeping on a fold-out couch. You’re eating Subway two meals a day. Meanwhile, outside the hospital walls, life goes on. Bills need to be paid. Other kids need to be driven to soccer practice. How on earth do you make all of that work? 

“You know, you just find a way, I guess,” says Jackson’s mom, Kristin Bell. She and her husband, Trent, often trade off – she does weeks, and he does weekends. 

“This whole process is so disruptive to these families,” Henderson said. “As if things aren’t tough enough dealing with a child who is very sick. These people have to uproot their entire lives. Put everything on hold. Most of us are lucky enough that we’ll never have to deal with anything like this. I can’t imagine what they’re going through.” 

Though it might be a nice consolation prize to live in the city where your child’s hospital is located, several studies have found that the way states like South Carolina – which are few and far between in the U.S. – handle pediatric cardiovascular surgery is leading to better outcomes.

“What makes what we do special is the system of care we've developed with out state-wide partners: delivering excellent continuity of care close to home and a single site where advanced procedures are offered," said Mark Scheurer, M.D., chief of Children’s and Women’s Services for MUSC Health. 

 

Often referred to as “regionalization of health care,” the idea of putting most of your resources into one place, versus watering them down at multiple locations, has several upsides. The most obvious of which is if you put all of your best surgeons in one place, you’re bound to have better results. It’s a basic tenet of life: The more times you do something, the better you tend to get at it. Medicine is no different.

“Don’t get me wrong, whenever possible, we want kids to get care close to home. But when you’re talking about some of the more complex procedures, it just makes sense to have one surgical center,” Scheurer said. “That allows us to build a team that can deliver the most advance therapies because we’re not trying to do it all over the state. Leaders around our state were very intentional in creating the collaborative environment we have today. In the end, it puts the patient and their family as the focus.”

The best medicine

Henderson, the boys’ cardiologist, remembers coming into work one weekend, and the 3rd Floor was oddly quiet. For the briefest of moments, she was concerned. But then she went by the boys’ rooms, one by one, and saw each of them sound asleep. One of the nurses explained that there had been a glow stick party the night before.  “Apparently, it was a late night,” Henderson said, the smile evident in her voice.

That’s because she gets it. She knows that their special bond and these shared experiences matter. That they give these three little guys something extra. Something tangible. 

Each other.

“This thing they have? It’s real,” Henderson said. “There is no doubt in my mind that they have an advantage that other patients don’t. They keep each other company, make each other laugh. And seeing that happiness – look, it’s hard to live in a hospital when you’re a kid – but these lighter moments, these normal moments, when they just get to be regular kids? These. These are going to be what gets them through.”