It was Xavier Crane’s first soccer game after open heart surgery — but most of the people in the stands had no clue. Neither did the opposing team. He was playing better than ever.

Xavier’s mom, Beth, was another story. She’d enlisted Xavier’s sister to come with her for moral support. Every time Xavier was knocked to the ground, she thought about his heart, his rib cage, the seriousness of everything he’d just been through. 

Hugging Xavier after the game, she finally let out a shaky breath. “That was the universe testing me,” she joked.

“No, Mom,” Xavier replied. “That was the universe showing you I’m okay.”

Pediatric heart care Beyond Imagination- now in Westport

Connecticut Children’s Heart Center offers cardiac care and surgery from birth through adulthood. Choose from 8 locations across the region.

Not long before, heart surgery was the furthest thing from anyone’s mind…

Yes, Xavier had been diagnosed with a heart murmur as a baby — but heart murmurs are common in kids, and most are completely harmless. Another health system had done a full workup, and didn’t find anything concerning.

In all the years since, he’d never shown any symptoms. Just the opposite: At 15 years old, he was excelling as an athlete, earning a spot on the varsity soccer team as a sophomore.

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“Sometimes I can’t believe that I actually had open heart surgery. When I think of Beyond Imagination, I think of recovering past where I thought was possible.”

Xavier

So when a nurse mentioned a heart murmur at his annual physical, it didn’t seem like a big deal.

“I thought, that’s old news. We’ve already had that looked at — it’s fine,” says Beth. But by coincidence, Xavier was also having some back pain. When she made an appointment with Connecticut Children’s Division of Orthopedics, she booked an appointment with the Heart Center, too.

From there, the dominoes fell. An X-ray showed that Xavier’s heart was enlarged, a sign that it had been working harder than normal. In Connecticut Children’s Echocardiography Laboratory, technologist Erin Mollman discovered why: She was able to detect a sinus venosus atrial septal defect (ASD) — a rare congenital condition that’s often tucked out of sight in imaging, making it notoriously tough to diagnose.

Alex B. Golden, MD, MMM, clinical director of Inpatient Cardiology, sat with Xavier and his parents to explain what Xavier needed next: open heart surgery.

“I was terrified at first. I was shocked,” says Xavier. Dr. Golden talked him through what it would mean for school, for soccer, and for the weeks and months to come. Xavier left the appointment stunned, but determined to do everything he could to prepare himself mentally and physically for the road ahead.

Later that night, Dr. Golden called to check in.

“It was a hard night. Everything had shifted in the world,” says Beth. “But Dr. Golden talked to us for over an hour, answering all the questions that had come up throughout the day. I felt like he would have sat on the phone all night if we needed that. That was pretty incredible.”

Beth often includes a star emoji in her texts to Xavier: His name means “bright,” and the family has long linked him with a star symbol. On the day of his surgery, his parents and three siblings held onto star-shaped stones as show of support. Xavier handed his to Beth before he was wheeled away.

The surgery to repair Xavier’s condition is complex and challenging, rerouting how blood flows back into the heart. It was led by Connecticut Children’s division head of Cardiac Surgery, Dennis M. Mello, MD.

“I vividly remember Dr. Mello checking in one last time before he went in for surgery,” says Beth. “He said, ‘I will take care of your son like he’s mine.’ And I believed him.”

The surgery was successful, and Xavier began recovery surrounded by a vast team of experts, including Critical Care specialists, physical therapists, pulmonologists, and of course, an army of nurses.

“I remember how excited the nurses were for me the first time I was walking after surgery,” says Xavier. “They were cheering me on because I made it to the end of the hallway, and every time I walked past the desk.”

Xavier, shortly after his open heart surgery at Connecticut Children’s

After four days, Xavier was able to return home, where he continued to push himself. He was committed to the exercise plan his care team had approved: walking further, then faster, around the streets and trails of his hometown, South Windsor. He was determined not to lose any progress as a soccer player.

In six weeks, he clocked 100 miles. “I was walking constantly,” he says.

Incredibly, after eight weeks, he was able to return to soccer without any restrictions. And he felt better than ever.

“I was playing better than I ever had, and was more fit than I’d ever been,” Xavier says. To his surprise, he felt “less fatigued, more energy. The surgery allowed me to do things I wouldn’t be able to do without it.”

The next school year, he became the school’s first junior captain of the soccer team. This year, as senior captain, he led the team to States.

“I’m not surprised,” says Dr. Golden. “Xavier is amazingly mature and was, from the first, a very active participant in his own care and recovery. I imagine he brings these same qualities — poise, maturity, preparation and discipline — to his athletics.”

Xavier is now 17 years old. For his senior year capstone project, he created a video sharing his health journey. In it, he offers reassuring, point-by-point advice for other young people who need heart surgery. He is proof of what’s possible with the right care team, and the right attitude.

I want kids and families who are dealing with heart surgery to realize that positivity is so incredibly important during this time,” Xavier says. “Remind yourself that this surgery is going to help you get better and improve.”

Xavier celebrates his accomplishments as a star athlete and grateful patient

“Every day I am grateful for the care Connecticut Children’s gave me, and for helping me recovery so quickly,” he adds. “Sometimes I can’t believe that I actually had open heart surgery. When I think of Beyond Imagination, I think of recovering past where I thought was possible.”