Rowan was diagnosed with a rare condition that stopped his heart. Thanks to his fast-acting parents and care team, he’s getting back to a normal life.

Child Health | 3 years ago

All the Bells and Whistles of Heart Care for Rowan

Rowan was diagnosed with a rare condition that stopped his heart. Thanks to his fast-acting parents and care team, he’s getting back to a normal life.

For the 12th year in a row, Levine Children’s Hospital is named a Best Children’s Hospital by U.S. News & World Report. This year, we ranked in more specialties than ever – 7! Learn why this matters, or keep reading to see how our heart care makes a difference.

Rowan was diagnosed with a rare condition that stopped his heart. Thanks to his fast-acting parents and care team, he’s getting back to a normal life.    

We have a pulse.

Those four little words meant everything to Rowan Carter’s family. Just seconds before, they’d been waiting for the paramedics to announce their little boy’s time of death. But with those words, they had hope.

A series of mysterious fainting spells last year had secured Rowan an urgent referral to a heart specialist. He hadn’t had his first appointment when he fainted once more, and this time was different. Instead of waking up like he had before – pale, shaky and scared – Rowan wasn’t coming to.

He wasn’t even breathing.

Not for the last time, Rowan’s entire family flew into action to save his life – from his dad, Sean, who dialed 911 to his grandfather who performed CPR. “There was no way I wasn’t going to do what I could until I got him back,” recalls Sean, who took over CPR while they waited for the paramedics.

Rowan was in cardiac arrest when the paramedics arrived. They were able to shock his heart to bring the rhythm back, making this the first of at least two more times the 7-year-old’s heart would come to a complete stop.

By the time Rowan arrived at Levine Children’s Hospital, he was stabilized but far from well. Now under the close watch of his expert pediatric heart team, all focus turned to the question at hand: What causes an otherwise healthy child’s heart to stop?

To the heart of the problem

Catecholaminergic polymorphic ventricular tachycardia. Or CPVT, for short. That’s Rowan’s official diagnosis, and it’s a rare heart condition characterized by an abnormal, fast heartrate. As in Rowan’s case, it can cause fainting and cardiac arrest.

Rowan’s care team knew he needed devices to help his heart beat, which would mean surgery, but his body was too weak when he first arrived at the hospital. “It’s one of the most severe cases I’ve seen of this condition,” says Karl Welke, MD, a heart surgeon at Levine Children’s and Sanger Heart & Vascular Institute. “Most of his hospitalization was recovering from events and getting ready for treatment.”

Rowan spent two weeks on life support and underwent countless treatments and a long waiting period before his body was stable enough for surgery. Fortunately, Levine Children’s has what Dr. Welke calls “all the bells and whistles” for kids with heart conditions. From a pediatric intensive care unit just for heart kids to advanced anesthesia services, Rowan had everything he needed to get better, in one place.

Through it all, his family was right there with him. In fact, Dr. Welke says it’s thanks to their quick acting that Rowan is alive today. Dr. Welke calls them lifesavers, but to Sean and Heidi Carter – well, they were just being parents. “It’s just what you do,” says Sean. “When it happened, there was never a question that we’d be living at the hospital with Rowan. And the people at Levine Children’s made it easy for us to have our say and be involved in his care.”

Rowan’s treatment at Levine Children’s Hospital was complex to the end, when he was strong enough to finally undergo surgery to put a defibrillator and pacemaker in his body. These devices sense when his heart is beating irregularly and shock it back to a normal rhythm.

After several weeks in the hospital and lots of ups and downs, Rowan was finally ready to go home.

Putting things in perspective

If you didn’t know better, you’d think Rowan Carter is just a healthy 7-year-old boy. He’s laughing, talking, eating and even starting to do homework again.

But just like Rowan’s journey didn’t stop in the ambulance ride, it doesn’t stop at home, either. His experiences at the hospital wiped out his body, and he goes to physical therapy twice a week to regain his strength. In addition to one more surgery, he’ll also need a balance of medications and his defibrillator for the rest of his life to help his heart beat normally.

Even so, the Carters are counting their blessings. “You really do realize how precious every moment is,” says Heidi.

“It puts everything in perspective,” adds Sean.

Fortunately, Rowan is right where he needs to be, with his best support system. His parents have taken the time to understand his condition and learn everything they can about his treatment, and they’ll be able to teach him and help him stay healthy as he gets older.

Until then, Rowan is enjoying getting back to a normal life, and outside of a few extra doctor’s visits every year, he’ll be able to do just that.