Taking a closer look at heart issues

People from all walks trying to solve the mystery of heart trouble in young athletes

Originally Published: August 29, 2012
By Myron Medcalf | ESPN.com

He trusted the lights.

Kevin Gant stared at the flashes through the windows of the Owensboro Sportscenter in Owensboro, Ky., moments after paramedics carried teammate Jeron Lewis off the court. A 6-foot-8, 260-pound forward, Lewis collapsed in the second half of Division II Southern Indiana's road win over rival Kentucky Wesleyan on Jan. 14, 2010.

But Gant, a former point guard for the Screaming Eagles, believed the ambulance's lights were a good sign. If he could see them, then the paramedics were still in the parking lot helping his friend. If they were in the parking lot, he figured, the EMTs had stabilized Lewis.

[+] EnlargeJeron Lewis
AP Photo/Daniel R. PatmoreJeron Lewis died in January 2010 after collapsing during a game between Southern Indiana and Kentucky Wesleyan. He was just 21 years old.

Once the game ended, however, Southern Indiana coach Rodney Watson walked into the locker room and relayed the tragic news: Lewis hadn't survived. He died, they would learn later, due to a heart condition he never knew he had.

"It was all a shock. Nobody really reacted right away. It took a little bit to hit me," Gant said. "We all kind of just dropped our heads and reflected for a while. Tears started coming out silently. You could look up and you could see tears in each player's eyes. It got real quiet."

They are united by the silence that covers a room when the hearts of fit young men -- conditioned athletes who have barely lived -- unexpectedly malfunction.

A family friend in Michigan. A prep coach in Wisconsin. A mother in Florida. Gant and his former teammates at Southern Indiana.

They have all felt that eerie stillness.

Each year, nearly a dozen college athletes in America die of sudden cardiac arrest, per NCAA estimates. The NCAA has chartered a new study to assess the feasibility of screening every Division I athlete for heart abnormalities that trigger the trauma. The findings, expected to be released in 2013, could alter the NCAA's policy on physical examinations for college athletes.

The deaths are shocking both because of the victims' youth and assumptions about the capabilities of modern medicine. The fact is that detecting potentially fatal heart conditions in the active youngsters who are most vulnerable is still a challenge in the 21st century, even for the experts. Sometimes the first indication of a problem is also the last.

A determined team of doctors, parents, athletes, coaches and volunteers remain committed to eliminating all occurrences of sudden cardiac death among young athletes, and young people in general.

They're donating defibrillators. They're fervently studying the heart. They're raising awareness. They're making strong recommendations on heart screening for competitive athletes. They're trying to save lives.

'A ticking time bomb in my chest'

In his best pro season, Fred Hoiberg made nearly half of his 3-point attempts, leading the NBA with a 48.3 percent mark from beyond the arc.

The shooting guard for the Minnesota Timberwolves was unaware that it would be his last as a professional athlete.

After's Hoiberg's life insurance application was rejected midway through that season, a follow-up heart exam at the Mayo Clinic in Rochester, Minn., revealed that he had been born with an abnormal heart valve, a condition that caused an aortic aneurysm.

He had never experienced any chest pains. No fainting, no tightness.

That season, Hoiberg thought he was as healthy as he had ever been. He was stunned when doctors told him that he had played his final game.

[+] EnlargeFred Hoiberg
David Sherman/NBAE/Getty ImagesFred Hoiberg was a prolific 3-point shooter, but he was playing with a 'ticking time bomb' in his chest.

"The hardest part is I had no symptoms. I felt great," said Hoiberg, who lives with an internal defibrillator that will jolt his heart if it detects a life-threatening arrhythmia. "I'd just had my best year in the NBA, and here I'm told that I'm going to have to have a procedure that you normally associate with your grandparents. I was 32 years old, I had four kids. It was extremely difficult. … But I was basically out there on the court playing with a ticking time bomb in my chest."

The thought of competitive young athletes enduring years of strenuous activity without any knowledge of their hidden maladies is a troubling one for Dr. Jonathan Drezner.

Drezner, president of the American Medical Society for Sports Medicine and a team doctor for the Seattle Seahawks and the University of Washington, is the chief researcher of an NCAA-funded study that is analyzing the barriers to accurately identifying cardiac abnormalities in college athletes.

With the NCAA's $85,000 research grant, Drezner and his partners have screened more than 900 athletes at 11 Division I schools. Those who volunteer are asked to fill out a questionnaire about their personal and family medical histories, take a physical exam and undergo an electrocardiogram, which monitors the heart's electrical activity.

Doctors at the University of Washington review the EKGs and work with participating schools to identify any blemishes. The EKG is not a required component of physical exams for Division I athletes. They're not even recommended by the American Heart Association because of the prominence of false-positive tests that can lead to misdiagnosis.

Still, the NCAA wants to know if it can do more to detect these heart conditions.

"We needed to find out some answers," said David Klossner, the NCAA's director of health and safety.

The American Academy of Pediatrics estimates that 2,000 people under the age of 25 suffer sudden cardiac death every year in the United States. According to the NCAA, which requires physical examinations for competitive athletes but not EKGs, about one in every 40,000 student-athletes are affected by sudden cardiac death.

"We have data that says college athletes are at substantially higher risk [for sudden cardiac death] than we once thought," Drezner said.

The 1990 death of Loyola Marymount star Hank Gathers, who suffered from a condition called hypertrophic cardiomyopathy -- the greatest culprit in sudden cardiac death among young athletes (40 percent) -- changed the discussion about heart health in sports. But hundreds of athletes without Gathers' profile have lost their lives on soccer fields, baseball diamonds, basketball courts and football fields around the country.

[+] EnlargeHank Gathers
AP PhotoThe heart-related death of Loyola Marymount star Hank Gathers shook the sports world in 1990.

Dr. Barry Maron, a Minneapolis-based cardiologist who has written 800 published pieces on the issue, has tracked more than 2,500 cases of sudden cardiac death among young athletes in a registry he created in 1980.

"These are very unpredictable events. It is not uncommon for somebody to harbor something potentially lethally for a long time while playing at the highest level," said Maron, director of the Hypertrophic Cardiomyopathy Center at the Minneapolis Heart Institute Foundation. "Something triggers it. It's not clear what."

Maron said the larger colleges can afford to implement the most comprehensive -- and expensive -- tests for their athletes. But cost could be a factor for smaller programs. Screening every NCAA athlete, and the subsequent care and procedures attached to those tests, could be a multibillion-dollar undertaking.

Although that universal assessment, if found to be practical and cost-effective by the NCAA's study, could dramatically reduce the incidents of sudden cardiac death, Drezner said it would still be a flawed system.

"None of the screening programs we implement are perfect," he said.

'You definitely do get angry'

Karen Fray's son couldn't move.

After paramedics brought 17-year-old Xhosa Fray-Chinn to the Walt Disney Pavilion at the Florida Hospital for Children in Orlando, Fla., last month, doctors dropped his core temperature to 87 degrees and gave him paralytic drugs to relieve the swelling on his brain. Fray could see a bluish hue underneath his fingernails when she grabbed his hand.

Xhosa's medically induced coma lasted five days. Five days for Fray to ask questions, five days for the mother of two to get angry.

Two years ago, Fray took her son to see a pediatric cardiologist in their hometown of Orlando. A physician who had initially screened him advised her to seek additional testing after an abnormal EKG.

Fray spent nearly $4,000 on a series of tests that included an echocardiogram, a three-dimensional heart sonogram that is more expensive than an EKG but usually more accurate.

A team of doctors told Fray that Xhosa, who had earned a scholarship to play basketball at Central Georgia Technical College in Macon, Ga., had a "muscular heart" but no reason to be concerned.

"They cleared him," Fray said.

On July 30, Xhosa collapsed during a pickup game at a Florida middle school. His mother searched for the school's automated external defibrillator, as Xhosa's father, Vernon Chinn, performed CPR.

"He's not moving. He's not responding. He's not breathing," Fray recalled herself saying.

[+] EnlargeJay Pickering
AP Photo/Mike WintroathIn many cases, an automatic external defibrillator can be the difference between life and death.

A nurse who lived nearby drove to the gym and helped with the CPR. A student found the AED that paramedics used to shock Xhosa two times. Doctors told Fray that the AED saved her son's life.

They diagnosed Xhosa with HCM and advised him to quit basketball. He now lives with an internal defibrillator.

Fray said her son enrolled in classes at a local school Monday. Just four weeks ago, he was excited about his first year of college basketball. The abrupt change, Fray said, is what hurts most.

"If they had said he had a heart condition and he can't play anymore [two years ago], we would have totally made a life adjustment for him," she said. "You definitely do get angry. Why him? There's nothing we can do now."

Those limitations and errors have fueled the controversy about the appropriate cardiac evaluations for competitive athletes. The best tests -- and doctors -- in the world can fail. It's possible for both to discover false signs of illness in someone who is completely healthy.

"Our eyes are opening," Drezner said. "We've had a model we've established that's raised a lot of questions. And people are questioning its effectiveness.

"So now we're looking at models where we think we might be able to do this better. And we have to understand that. And before we can implement those models in a really broad fashion, we need to educate physicians on how to do it."

Lisa Salberg, founder of the HCM Association, said it's important to get young athletes to communicate any symptoms. About 20 percent of the young athletes who have potentially fatal heart conditions will experience chest pain, fainting or other indicators. The rest will not feel anything.

Salberg said she receives calls from concerned athletes who want to know about potentially fatal heart conditions. But they also want to stay eligible and active.

"These guys may actually feel something, but for one of two reasons they don't say anything," said Salberg, who was diagnosed with HCM when she was 12. "One: They really perceive it as normal. I always thought it was normal to feel my heart pounding in my chest. Or they don't want to talk about the symptoms because they know if they say something they're going to get benched."

'What the hell has changed?'

On Nov. 13, Seth Greenberg plans to fly to High Point, N.C., to watch Allan Chaney play his first game in three years. The former Virginia Tech coach, who is now an ESPN analyst, is already anxious about that trip.

[+] EnlargeAllan Chaney, Lamar Twitty
AP Photo/Phil SandlinAllan Chaney hasn't played a regular-season college hoops game since 2009.

Chaney, who transferred from Florida to Virginia Tech in 2009, will be the only Division I basketball player with an internal defibrillator this season. He joins rare company.

After a heart ailment ended his Pepperdine career, Will Kimble had one implanted in his chest and competed at UTEP from 2004-06 with no incident. But former New Mexico forward Emmanuel Negedu, who wasn't cleared to play at Tennessee because of his heart issue, was forced to end his basketball career after his defibrillator gave a bad reading during his 10th game with the Lobos.

"There's still risk," Greenberg said. "Is it worth the risk? I'm having a hard time with it."

Chaney's saga began two years ago when he passed out during an individual workout in April 2010. After that event, the 6-9, 235-pound forward was diagnosed with viral myocarditis, an inflammatory disease.

Virginia Tech refused to clear Chaney, who hasn't competed in a Division I game since the 2008-09 season. But cardiologist Dr. Francis Marchlinski of the University of Philadelphia gave Chaney the green light to compete again in May after strenuous physical tests. He transferred to High Point this summer.

Chaney said he doesn't have any reservations. Only joy.

"I think I appreciate the game more," he said.

Greenberg said he stayed away from the in-house discussion about Chaney's medical status. But he had personal concerns based on a past experience. Greenberg was an assistant at Long Beach State when he recruited former Southern California prep star Earnest Killum, who chose Oregon State.

In 1992, Killum, died of a stroke that was caused by blood clots. He was 20.

"It weighs heavy on my heart," Greenberg said. "You get so close to the young people and their families."

[+] EnlargeLeonard
Bill Pugliano/Getty ImagesAfter losing their son to sudden cardiac arrest last year, Gary and Jocelyn Leonard are on a mission to place life-saving AEDs in every school.

But medical technology has evolved since that time. Advancements in defibrillator technology could make Chaney a pioneer, and others may follow his lead in the coming years. And AEDs have been placed in schools and colleges around the country.

Jocelyn Leonard has raised enough money through a foundation named after her son -- The Wes Leonard Heart Team -- to certify hundreds of CPR instructors and donate 69 AEDs (with a market value of $2,000 apiece) to schools in Michigan.

Leonard's son, Wes, collapsed after making the game-winning layup for Fennville (Mich.) High School last year. Rescuers located the school's AED, but the batteries were dead. The 16-year-old died at the hospital.

Since then, his mother has led a push to place AEDs -- Drezner said most athletes who are shocked early survive cardiac events -- in schools throughout the state. The precautionary screenings that aim to detect heart issues in young athletes is only one component in the battle to save the lives, she said.

"Sometimes, we won't know what they have until it stops," Leonard said. "Overall, we're going to save a lot more people. You're going to save people in the stands, the coaches that get too excited. You're going to save the referees. … People are using [AEDs], and they're getting people back."

The grassroots effort to alert authorities, coaches and athletes about sudden cardiac death is vast and growing.

In Grafton, Wis., a group of children raised more than $40,000 to renovate a local court in honor of their teammate, Josh Davis-Joiner, who collapsed and died of a previously undiagnosed heart condition in January.

"Coaches are having to go and get AED- and CPR-certified. That push is now beginning," said former Grafton High coach Kevin McKenna. "I guess out of a tragedy, if we can save a life because a coach knows about it and knows how to use the AED, knows how to give CPR, I think that Josh is up there smiling on that."

Salberg is working with New Jersey lawmakers who are seeking more efficient methods to identify heart ailments in young people.

[+] EnlargeCoaches Training
AP Photo/Wade PayneMore and more coaches are receiving CPR and AED training, but there's plenty of work to be done.

Drezner is recruiting additional athletes and schools for his NCAA study on heart screenings.

Leonard raises money by selling "Never Forgotten" T-shirts on the Wes Leonard Heart Team's website.

Maria Flores, Leonard's friend, has turned one of her bedrooms into the organization's main office.

For Flores, this is just the beginning. More schools need AEDs. More people need CPR training. More folks need to know Wes' story.

And Jeron's. And Hoiberg's. And Xhosa's. And Chaney's. And Josh's.

"It's been 20 years [since Hank Gathers' death], and what the hell has changed?" Flores said. "Nothing. We are still losing these kids. We have to stop it."

Everyone involved in the pursuit of a solution acknowledges that.

Yet, the question of "How?" is sometimes met with silence.