It was summer, and Brody Anderson’s freshman year had just ended with his varsity soccer team at Darlington making a playoff run that fell just short of the state finals. He was the only ninth-grader on the team, a natural athlete who had been on the soccer field since he was 6 and was now playing alongside his older brother Cody.

The team went 13-2 that year, including 8-0 in the region, and averaged almost five goals a game. But their playoff contest against Atlanta International ended in a disappointing 0-1 loss. His mother, RuthAnne Anderson, feels like that shortened postseason run might just have saved Brody’s life.

What they didn’t know, but would soon learn, is that Brody had been living with two heart diseases — the combination of which is so rare that a heart specialist would later use his case to lecture to fellow doctors and medical students around the world.

Summer bike ride

Early in the summer of 2007 Brody, his mother, and his younger brother Zane were loading the truck to go for a bike ride, something they’d done dozens of times before and undoubtedly expected to do again in the future.

“We were going biking just after school ended freshman year. I picked up my mom’s bike to put it in the truck and my heart started racing and I couldn’t breathe,” said Brody, now a high school senior, recounting the first time he knew something in his body was seriously wrong.

Brody collapsed, his face turned a pale “greenish-yellow, like the blood had been sucked out him,” said his mom. His limp frame poured sweat and he was cold to the touch, but he complained of being too hot. He said he was weak, and he couldn’t stand up.

“When he collapsed putting the bike in my truck, in my eyes, he looked like he was having a heart attack. I just couldn’t believe what I was looking at,” said RuthAnne.

They rushed to the hospital, and over a year’s time were sent to heart specialists in Salt Lake City and Atlanta, among others. It became a mystery that would be solved by accident.

Internet answers

Brody’s sophomore year passed slowly and was interrupted by frequent doctors visits. Because his heart was almost constantly beating faster than normal, Brody was always tired and always needing more sleep.

“Basically his whole sophomore year he went from doctor to doctor to doctor and state to state, and he was exhausted. He looked awful. He had lost a lot of weight,” said RuthAnne. “People thought he’d been working out. Really, he’d been sleeping the whole time.”

He had trouble even getting out of bed in the morning, and sometimes didn’t get up at all. He missed dozens of days of school. When he did go to class, he’d come home and go to bed, sleep for a few hours, wake up, do his homework, and go back to bed.

Meanwhile, a doctor in Rome told RuthAnne she should check out the Hypertrophic Cardiomyopathy Association Web site. She did, and a lot of the symptoms described on the site matched her son’s condition, so she started the process of becoming a member but didn’t quite complete it.

Then she got a phone call. The woman who ran the site wanted to know why RuthAnne had stopped the membership process and wanted to know more about Brody. RuthAnne ended up sending this woman she’d never met some of her son’s medical records. Later, the woman called to say there was a heart specialist in Minnesota that wanted to meet Brody.

“It happened to be the man who wrote the book on hypertrophic cardiomyopathy,” said RuthAnne, explaining that the doctor later asked for her permission to share Brody’s case with other doctors because of the rarity of his condition.

Heart disease

Brody was diagnosed with hypertrophic cardiomyopathy, a condition in which the heart muscle becomes thick, making it difficult for it to pump blood efficiently. About one in 500 people suffer from HCM, and the condition can cause sudden death among people otherwise considered healthy.

Brody’s second-grade teacher lost her daughter to the disease. The middle-school girl collapsed and died on a basketball court during a game.

Some of the symptoms — fatigue, light-headedness, dizziness, trouble breathing — Brody and his mother had noticed before. RuthAnne suspected he might be developing asthma. But he had annual sports physicals, and everything always turned up as it should.

Brody said he first felt his heart race uncontrollably while playing hacky-sack with some friends.

“But I didn’t really do anything about it because I didn’t think it was anything serious,” he said.

Brody was also diagnosed left ventricular noncompaction, a condition in which the muscular wall of the main pumping chamber of the heart appears to be spongy and “non-compacted.” A particularly rare occurrence, only one in 2,000 echocardiographs result in the discovery of LVN, and each case has to be treated on an individualized basis because of the lack of case studies available. Every case is literally different in some way from the next.

For Brody to be diagnosed with both conditions was unheard of.

Treatment decisions

Before the doctors told RuthAnne what was wrong with her son, they had Brody leave the room.

“So I knew it was serious,” she said, explaining that as she began to learn more about the disease her breath was physically taken away.

For his part, Brody doesn’t really remember the first time they told him about his heart problems. He does remember the first time they told him he’d never be able to play sports again.

“It made me suddenly tired, weak,” Brody said.

RuthAnne said that’s how he’s always handled bad news, by crossing his arms and lying his head down. While she says her son has come a long way in his ability to talk about his heart condition, RuthAnne acknowledged that wasn’t always the case.

To treat Brody’s heart, doctors had to operate on the muscle’s electrical system. He describes the problem like this: instead of the electricity powering his heart cycling in and out like it should, it was going round and round in a circle, causing his heart to beat like crazy. At one point his heart rate reached almost 350 beats per minute, a pace doctors said should have killed him.

So Brody had heart surgery to correct that problem. Doctors also inserted a device called a Reveal, which is a heart monitor that begins recording the heart’s beats if the pace drops below 40 beats per minutes or above 140 beats per minute. If at any point Brody gets the feeling like something is wrong, he also has a handheld control that allows him to turn on the Reveal. Doctors download information from the monitor every six weeks or so to see how he’s doing.

The only permanent thing about the Reveal is a pink scar about he size of a quarter on Brody’s chest just above his beating heart.

Life after sports

Brody can’t play soccer anymore. He’s not allowed to carry his luggage when he travels to out-of-state doctor appointments. He can’t take most medications. Sometimes he gets dizzy after walking up stairs. But there is still a lot he can do.

The Darlington senior is fourth in his class and has begun the college application process with his focus set on schools like Stanford, Georgia Tech, Colgate and Worcester Polytechnic Institute. He’s a classically trained piano player, and plans to continue playing, but he’s thinking about majoring in computer science.

Despite missing so much classroom time, he’s stayed on top of his education, excelling at honors and Advance Placement courses thanks in part to his work ethic and his natural ability to learn. He’s also involved in several student organizations and volunteer activities.

“I have to work, but it does fairly come naturally to me,” said Brody.

Though he’s told his closest friends about his heart diseases, most of Brody’s classmates are unaware why he gave up soccer. And while sports were a big part of his life, Brody says his relationships with his friends didn’t really change.

“They understood. They don’t really ask me to go out or go wake boarding or anything. Other than that, our relationships pretty much stayed the same,” he said, adding that sometimes not being allowed to be active does affect him. “I can’t run around or anything, so when I see my friends doing that I kind of feel, I don’t know, lonely.”

To fill the sports void Brody has coached soccer for a few years now and is currently teaching the game to a team of pre-school students. Darlington students are required to give back to the community, and Brody, disappointed about his own soccer career, decided to fill that requirement by coaching.

RuthAnne said Brody doesn’t seem to notice people who stare at the airport when she’s hauling their luggage and he’s empty handed, but she feels the looks. Because he’s considered handicap Brody has special parking privileges, and his mom also worries that people judge her son when they see a healthy looking young man exit his car after pulling into the blue-lined parking space.

“I don’t want anyone to feel sorry for him because he’s doing great, but I want people to know he’s not a lazy kid,” said RuthAnne.

The simple act of flying on a plane requires special consideration, too. Brody is treated as if he has a pacemaker in his chest.

“We learned not to say he has a device in his chest. Just say pacemaker. I said device, and their eyes lit up. Thank goodness I caught what I said,” said his mom.

He now drinks eight or nine bottles of water a day with the intent of thinning his blood, which makes it easier on his heart. He has to avoid caffeinated beverages. When Brody has a cold, there are only three heart-safe medications to choose from, and RuthAnne said they don’t work nearly as well as the regular medication.

“They taste really bad too,” added Brody.

Asked what else is different following her son’s heart surgery, RuthAnne thinks for a few moments before summarizing: “You know, every day things are different.”

Something to be thankful for

Even holidays are different for the Anderson family, who sometimes celebrate Christmas early or late depending on Brody’s dad’s work schedule. He is a pilot for UPS who’s home two weeks at a time and gone two weeks at a time.

“They were always out there playing together, whether it be soccer or basketball, they were always outside running around this time of year,” said RuthAnne.

RuthAnne said she’s more aware now of the news stories about children and teenagers simply dropping dead without warning while playing sports. She knows that could have easily been her son, especially if that final soccer season had continued longer because Brody might have been sprinting down the field instead of lifting a bicycle when his heart first caused him to collapse.

“We’re so thankful he’s here because ultimately I know we should have lost him that day or within that first year,” said RuthAnne.