From the surgical suite to the winner’s podium: brothers treated at Boston Children’s compete in the World Transplant Games

by Tripp Underwood on July 30, 2013

Though they’re two years apart, brothers Brock and Connor Marvin have a lot in common. They’re both affable, active young men who love watching and playing sports. Brock, the eldest, is a goal keeper for Oglethorpe University’s soccer team, while Connor holds places on his high school’s varsity soccer, basketball and golf teams.

They were also both born with a genetic heart condition so severe it would require them to receive heart transplants within a year and a half of each other.

A sudden shock

On an April evening in 2008, Brock and Connor were killing time the way they normally did by tossing a baseball back and forth in the backyard of their upstate New York home. Connor grew tired of the game and went inside after Roscoe, the family’s dog, stole the ball for the third time. With Connor gone, no one was there to see Brock, then 14 years old, drop to the ground without warning. A few minutes later Margot, the brother’s stepmother, noticed him outside, unmoving, while Roscoe licked at his face. She called out to him, and when she got no response, she ran outside, still shouting his name at his unmoving body. Then, almost as suddenly as he collapsed, Brock woke up—but he wasn’t himself.

Connor, Smitty and Brock

“I don’t remember anything now, but I guess I came to screaming and fighting,” he says. “From what everyone tells me, I was shouting and convulsing with my eyes rolling back in head.”

Margot, Connor and Smitty, the boys’ father, got Brock into their car and rushed off, while Connor called 9-11 to let the nearby emergency room know what to expect. Once Brock arrived, doctors were able to stabilize him but could do little else; his condition was serious enough that the small, local hospital wouldn’t be able to keep him alive for long. Within hours, Brock was en route to a larger hospital in Vermont aboard a New York State Police helicopter, flatlinning once on the ride over and once again upon arrival. Once [he was] stabilized in Vermont, tests revealed Brock had dilated cardiomyopathy, a disease of the heart muscle that prevents it from pumping blood properly. Given the advanced stage of Brock’s condition, treatment options were few, and the Marvins began researching other hospitals on the East Coast that might be able to help.

“We went online to decide where to go for a second opinion, and everything pointed to Boston,” says Smitty. “From the moment we got here, we never looked back. Dr. Blume and her team became like family. I can’t image going through this anywhere else.”

Elizabeth Blume, MD

At Boston Children’s, Brock was placed on medication and had a defibrillator implanted. Within a few weeks, he was feeling well enough to go home, but in time it became clear he would eventually need a heart transplant to live. And while the prospect of transplantation frightened Brock, the news that he wouldn’t be able to play sports until he received his new heart was the most difficult news he received that day.

“I was devastated,” Brock remembers. “Sports was how I defined myself, so to have them taken away so suddenly was almost unbearable.”

Déjà vu

A few months after Brock was diagnosed, Connor saw a cardiologist to determine if he had the same heart condition as his older brother. Initial tests showed his heart was in good shape, but given the genetic nature of Brock’s disease, doctors recommended he receive genetic testing as well.  The Marvins arranged for the testing to take place at Boston Children’s, and the results showed that like Brock, Connor was living with dilated cardiomyopathy. However, unlike Brock, Connor’s disease had not progressed as quickly, and doctors were hopeful that because the condition was detected in time, they could manage his care with medication.

By now Brock had taken up golf to fill the void in his life left by the absence of baseball, soccer and the like. Connor followed suit to keep his older brother company on the greens, and for the first time in their lives, the younger Connor started beating Brock in a sport. The two continued to spend their time on the links, and in time grew to love the game, as well as the competition it inspired between them.

“As the older brother, I wasn’t used to losing to Connor. It really stung at first,” Brock says. “But it made me want to play more, and we started going at it more and more. Sibling rivalry is a great motivator.”

Transplants

In late November of 2010, Brock’s health began failing. He spent the next few weeks at Boston Children’s until mid-December when he received his new heart.

It took time and effort, but Brock eventually rejoined his teammates, reestablishing himself as a competitor. Then, a little more than a year after receiving his new heart, Brock made a return to the soccer field, playing for the first time alongside Connor, who had recently made the varsity team at their high school. But what should have been a celebratory day for the Marvin brothers took a serious turn when minutes into the game, Connor’s heart started to fail, causing his defibrillator to repeatedly send off electrical charges to stabilize him. (In an ironic twist, when Connor was taken off the field, Brock was sent in to take his place.)

That evening a home monitoring device transmitted Connor’s heart data to his doctors at Boston Children’s. Within a few hours, the Marvins received a phone call telling them it was time to bring Connor to the hospital to be placed on the organ waiting list for a new heart.

Three and a half months later Connor, like his older brother before him, received a new heart.

World Transplant Games

These days, with the exception of the anti-rejection medicine they take to keep their transplanted hearts healthy, both Connor and Brock say their lives have completely returned to normal. Each is back in school and heavily involved in athletics, with little evidence that anything in their lives has changed since first coming to Boston.

WTG American Volleyball team

In fact, Brock and Connor are so active that they both were selected to compete at the World Transplant Games (WTG), an international sporting event for transplant athletes, held to demonstrate the physical success of transplant surgery and to raise awareness of the need to increase organ donation on a global scale.

This year’s games are held in South Africa, where Brock and Connor are currently representing America in WTG golf, Ping-Pong, volleyball and badminton competitions.

“The whole experience is going to be amazing, and I can’t wait to get there,” said Connor a few weeks prior to the trip. “Being asked to compete is an honor, and we owe a lot of that to Boston Children’s. Brock and I have worked hard to get to where we are, but we wouldn’t be anywhere if not for our team in Boston. ”

“Representing the US and transplant recipients is an honor,” agrees Brock with a sly smile breaking over his face. “But for me, I think the best part will be raising a first place medal in my brother’s face. Now that we’re both recovered, I’m looking forward to having that sibling rivalry heat up again. I can’t imagine a better place to do it than an Olympic golf course.”

Visit the following websites to learn more about Boston Children’s Pediatric Transplant Center and Cardiomyopathy Program

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