- November 5, 2024
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It was a Friday night in June 2011, in New York, and 15-year-old Connor Marvin needed a sub in his soccer game. Brock, his older brother, came on the field to give him a breather.
“He subbed me off, and my heart started racing after I sat down on the bench,” Connor said.
A racing heart is not a problem for teenage soccer players — it’s a normal occurrence. But not for Connor. When his heart acted up, so did his defibrillator — alerting him nine times that his heart was in arrhythmia and needed to be shocked to restart it.
“I thought I was going to die,” he recalled.
Connor, now a 17-year-old senior at Matanzas High School, was unusual on that soccer field because he had a defibrillator in the first place, but he wasn’t unique. His brother had one, too, just six months earlier. And that likely saved his life.
From catch to flatline — twice
It all began on a spring day in April 2008 in Elizabethtown, N.Y. Connor and Brock were having a catch in the front yard, like many brothers often do.
Tired of tossing the baseball and seeing their dog, Roscoe, steal the ball so many times, Connor went inside. Brock stayed outside with the dog. Twenty minutes later and after hearing no response twice, Connor and his family went outside to check on Brock. They found him lying in the grass, not moving. Roscoe was licking his face.
They tried talking to him, but he didn’t respond. Then Brock woke up.
“He started screaming, and his eyes were rolled back in his head,” Connor recalled.
The Marvins rushed Brock to the hospital, where he flatlined. Doctors and nurses said there was very little chance he would survive and that the hospital was too small to handle Brock’s medical emergency. He was flown in an emergency helicopter to another hospital in Vermont, where he flatlined again.
Brock Marvin, 14 at the time, just had a heart attack.
At the hospital in Vermont, doctors discovered he had dilated cardiomyopathy, a condition in which the heart becomes weakened and enlarged, resulting in the heart not being able to pump enough blood to the rest of the body.
Options were limited, and so Smitty Marvin, Brock and Connor’s dad, set off on a quest to find an answer through research on the Internet. But all advice led back to one place: Boston Children’s Hospital.
Dilated cardiomyopathy is genetic, and it comes from Brock and Connor’s mother’s side.
At the hospital in Boston, Brock became a patient of Dr. Elizabeth Blume, medical director of the Heart Failure and Transplant Program at Boston Children’s Hospital.
He was placed on medication and a defibrillator. He was also tested and put on the list for a heart transplant. It was the only option left.
Eventually, Brock began to feel better, and so he went home. But after about 18 months, Brock got so sick that he was admitted back into the hospital as a status 1A heart transplant patient, meaning he was on medication and must remain in the hospital until a new heart was available.
On the 10th day in the hospital — Dec. 11, 2010 — doctors found a match. Nine days later, he was discharged. Six months later, he was back doing what he loves: playing soccer with his brother.
After his brother was diagnosed, Connor saw a cardiologist, too, just to be safe. Connor’s heart wasn’t as bad as Brock’s, but more tests revealed he had the same heart condition. Connor would need a defibrillator. And he would be taking a risk whenever he stepped on the soccer field.
Déjà vu for the Marvins
The emergency trip from the soccer field to Boston Children’s Hospital in 2011 took 4.5 hours. They arrived around 1 a.m., not knowing this was the beginning of an even longer process than Brock endured.
Because Connor’s heart wasn’t as bad as his brother’s, doctors didn’t initially tell him he would need a transplant.
Then, in November 2011 — about a year from when his brother went into the hospital for a transplant — Connor was admitted as a status 1A heart transplant patient.
But unlike Brock, who found a match after 10 days, Connor waited.
And waited.
Weeks passed, and Connor waited in the hospital. He played his Sony PlayStation and passed the time through November. Then came Christmas and New Year’s. Then his 16th birthday in February.
One hundred days came and went. At times, the doctors told him a match had been found, but not a perfect match. They wanted to wait a little longer.
Just the beginning
Blume, who is also an associate professor at Harvard Medical School, said that as doctors learn more about cardiomyopathy, they understand more clearly the genetic nature of the disorder.
“We have many families that have cardiomyopathy in several family members,” she said. “It is very rare, however, for both siblings to need a transplant.”
Teenagers face chronic life-threatening conditions and must grow up really fast, Blume said. That’s something the Marvin brothers were able to do.
“It has been a privilege to share a small part of Connor and Brock’s journey with them,” Blume said. “I am hoping we have only seen the very beginning of their story.”
Finally, on the 105th day — Feb. 29, 2012, because it was a leap year — Connor Marvin got a phone call in the morning hours. They found a heart. At about 4 a.m. March 1, Connor went into the operating room.
Nine days later — just like his older brother — he was released.
A new perspective
The days of being on the same soccer field are over, but thanks to organ donors, today, Connor continues to hone his golf game with the hopes of playing in college. This year, he moved to Palm Coast with his father and step-mother, Margot Roemischer, who is a teacher at Matanzas High School. Brock, a sophomore in college, plays soccer at Division III Oglethorpe University, in Atlanta.
Despite his dreams of athletic success, however, Connor is able to maintain perspective.
Moments after finishing his worst round of the season last week at the Cypress Course, Connor sat in a golf cart. His feet were elevated, resting on the front dash, like he was sitting in a La-Z-Boy recliner watching football. He was smiling as he watched some of the younger players hone their putting stroke on the practice green.
He was just in from shooting a 45 against Flagler Palm Coast on Oct. 10, a disappointing round for him, though his team still won the match.
“That’s a tough course,” he said. “It’s very narrow.”
In some ways, Connor’s nine-hole journey on Cypress was a perfect metaphor for his life journey: tough, with several narrow windows of hope.
In focus: organ donation
Today, even when playing golf, Connor wears a green band on his right wrist that reads DONATE LIFE.
It’s a cause the whole family supports.
“Some days, you’re wondering if you’re going to lose your kid, and the next day, you’re grateful because your child received a heart transplant,” Smitty Marvin said. “It was four years of real high highs and real low lows.”
Although they don't know the identities of their donors, both Connor and Brock wrote letters to the families.
“I just described who I was," Connor said, "that I was an athlete, a class clown — just kind of a goofball. And I wasn’t enjoying life in the hospital. And that at the worst time of your life, you couldn’t have made my life any better.”
Being an organ donor should be an opt-out, not an opt-in, Connor believes. He said people should be organ donors unless they register not to be one.
Connor and Brock can’t be organ donors because of the medication they still have to take after their transplants.
“It’s one thing that ever since I was diagnosed, I supported,” Connor said of organ donation. “If you’re getting buried with your organs, you’re doing the wrong thing.”
Smitty Marvin said it’s all about awareness. And as a father of two organ recipients, he is very aware.
“Not only did I get one heart, I got two hearts,” Smitty Marvin said. “The odds are quite slim for that. We’re at the point now where we’re not out of the woods yet, but we’re far enough out where we can see the light again. We know there’s a good chance they can live a fairly long life with the hearts they have.”
