A New Kind of ‘Super’ Heart Surgery — Boston Children’s Answers

Easton Shrine in a Spider-Man costume riding a tricycle in the hallways of Boston Children's Hospital.
Even when he’s not dressed as a superhero, Easton still identifies as “super.” (Photo: Michael Godale, Boston Children’s Center)

When you have a new type of heart surgery for the first time in the world, you don’t have to use the clinical name of the surgery. You can give it any name. You can also give it your own name.

That’s what the family of 7-year-old Easton Shrine did. The Boston Pediatric Cardiac Surgery team calls this landmark procedure a “reverse double-switch 1.5 ventricular repair,” but at home in Shrine, North Carolina, it’s known simply as “Super Easton.”

That’s a fitting tribute to Easton. His parents believe he is anything but super. Confident, persevering, and fun-loving, he has made the most of several complex heart surgeries, as well as brain surgery and his over 30 radiation treatments.

“He’s fighting for everything he has,” says his mother, Julie. “He is such a wonderful boy.”

Wearing a Sheriff Woody T-shirt, Easton lounges on a bench on the roof of Boston Children's Hospital.
Easton underwent three heart surgeries after birth to strengthen the heart’s circulatory structure, but the last major heart surgery was awaiting.

find another way

Three days after giving birth at a local hospital, Easton suffered from heart failure and was diagnosed with hypoplastic left heart syndrome (HLHS). This is a congenital heart defect (CHD) where underdeveloped structures on the left side of the heart fail to pump blood effectively, causing breathing difficulties and other symptoms. While Julie and her husband Merlin handled the diagnosis, they also had to worry about Easton needing treatment for sepsis.

After recovering from sepsis, Easton underwent three surgeries over the next six months (lung banding surgery, Norwood surgery, and bidirectional Glenn surgery) to reshape the heart so that the stronger right ventricle could do the work of the two ventricles. Surgery was performed to reconstruct the anatomy. When he reaches the age of 2 or 3 and his mind has matured as expected, he can undergo his final procedure, Fontan.

But during Easton’s care, one clinician said some hospitals were doing “new procedures” aimed at more than single-ventricular anatomy. Following the success of bidirectional surgery, Glenn, Julie, and Merlin investigated cardiac surgery programs at these hospitals, including Boston Children’s Hospital. They spoke with Dr. Sitaram Emani, director of the Boston Children’s Complex Bi-Room Restoration Program, who studied Easton’s medical history. Dr. Emani said Easton could one day be a candidate for biventricular repair, a complex procedure that creates a heart with two functioning ventricles. “We were thrilled,” recalls Julie. “That was supposed to be the next big step.”

A cardiologist puts a stethoscope to Easton's chest.
Cardiologist Dr. Roger Breitbart, one of many experts at the Benderson Family Heart Center treating Mr. Easton, was diagnosed with COVID-19 during a visit in 2019. Tested him prior to mask protocol.

serious setback

But about three weeks before his first visit to Boston Children, Easton showed no reaction during an afternoon nap. He was rushed to a local hospital, where he was diagnosed with a brain tumor and a buildup of cerebrospinal fluid. At just 19 months of age, he required emergency surgery to remove the tumor and another procedure to place a shunt to drain excess fluid. After that, he was placed in palliative care and he underwent 33 radiation treatments.

“It closed him off,” says Julie. “It took Easton about six months to relearn how to walk and talk, and a few more years before he could run and jump without tripping. He’s definitely a martial artist, he loves life and he doesn’t want to lose it.”

Dressed in a green cap and gown, Easton holds a kindergarten diploma.
After surviving extensive treatment for a brain tumor and a cerebrospinal fluid buildup, Easton finally moved on to the next stage: the final stages of several complex heart surgeries.

making history in heart care

After recovering from a brain tumor, Easton underwent heart surgery and made a good recovery. But Dr. Emani eventually told his family that Mr. Easton’s heart couldn’t stand the two ventricles to fully pump. Fontan’s surgery, the only alternative to biventricular repair at the time, would have been a better fit for his anatomy.

But the day before Fontan surgery, Dr. Emani made a bold proposal. His team thought Easton’s left ventricle had enough potential to help circulation and wanted to quit Fontan and try a new procedure they had created for his condition. Easton will introduce the world’s first “reverse” double-switch 1.5 ventricular repair as part of its strategy to surgically rehabilitate the left ventricle of patients with left perimeter border. In fact, he will be the first person to undergo surgery for any heart condition. His parents knew the surgery had to be approved.

“We weren’t 100 percent sure he was number one, but we were 100 percent sure we were doing the right thing,” recalls Julie. “If it didn’t work out, we knew we could help other families in our position.” More than that, they respected Easton’s desire to live. I wanted to “We were willing to take risks in the hope that he would get more time. We knew how much joy he brought to others. He has a personality of his own and he loves to make people smile.”

Easton stands on the quay above the river.
It’s not just for a reason that they call his world’s first heart surgery “Super Easton.”

Smiles, swimming and soccer

Three years later, and fully recovered, Easton is still smiling. A bit of a “joke star,” he makes his parents and siblings (Caitlin, 28, Grayson, 15, and Bryson, 11) laugh. They cherish the time they spend with him. He can now run, swim, and ride his bike without any problems, and no longer needs the oxygen bottle he used to rely on almost every time he caught a cold. He also enjoys rooting for his team at the University of North Carolina Greensboro football, sometimes running onto the field and high-fiving the players before games.

History books may not call his operation “Super Easton,” but his family wouldn’t mind. They are happy that their superhero is finally healthy. “Easton going through it first gave us mixed feelings,” Merlin says. “It’s been a huge leap. But we’re so grateful that he’s doing well and that this surgery has helped other children.”

Learn more about the complex biventricular repair program or request a second opinion.

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