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A mother’s mission: Raising awareness of Sudden Cardiac Death

A dozen years later, Maruchi Mendez still chokes on her words when she talks about her son, a star baseball pitcher. A strapping athlete scouted by the pros, he keeled over in his South Miami backyard while playing catch.

Ramiro “Toti” Mendez was dead at 20 from sudden cardiac death — a tragedy that Mendez and many cardiologists believe could have been prevented with a routine test.

“An athlete gets tested for how fast he can run, how far he can throw, how high he can jump,” said Mendez. “Scouts know his grades and his test scores. But we don’t really know if everything is working inside.”

Since Toti’s shocking death, Mendez has championed one cause, a crusade that has led her to lobby legislators, pushed her to pore over medical research and, now, has inspired her to write a book, Finding Home: A Memoir of a Mother’s Undying Love and an Untold Secret ( Reedy Press, $16.95) A Spanish translation published by Penguin will be out in April.

Sudden cardiac death, commonly referred to as SCD, is the No. 1 killer of young athletes. The American Academy of Pediatrics estimates that 2,000 people under 25, most of them high-school age, die from it every year in the United States. That’s why Mendez has devoted the last decade to campaigning for high school and college athletes to be screened for heart trouble with an electrocardiogram, or EKG, before they take to the practice field.

This routine exam would have likely detected Toti’s cardiomyopathy, the underlying abnormality that led to his death.

That knowledge haunts Mendez, who, at 65, still lives in the house she shared with Toti and three older children from a first marriage.

“I feel like we failed him’’ said Mendez , who writes poignantly of Toti’s life, from his adoption in Spain and childhood in Miami to his all-too untimely death.

As a ball player, Toti racked up honors. He was named Miami-Dade County’s 1998 player of the year during his tenure at baseball powerhouse Westminster Christian School, where he had stellar statistics on the mound and at the plate, an earned run average of 1.34 as a pitcher and a batting average of .444. He went on to play at Florida International University.

But routine athletic physicals during his career failed to screen for a “silent killer’’ she’d never even heard of before a visit to a cardiologist weeks before his death in April 2000.

“Outside Toti looked the picture of health,” Mendez said, pointing to the many pictures she keeps around the house. “But his heart his heart”

Using EKGs as part of an athletic physical is a subject of considerable debate and policies mandating them for student athletes vary widely. Most European countries, as well as Japan, require the tests for competitive athletes, including those playing school sports. So does the International Olympic Committee. The U.S. Olympic Committee, on the other hand, does not.

Florida has no such requirement either, though Mendez pushed for just such a bill two years after her son’s death. One state, Pennsylvania, passed the Sudden Cardiac Prevention Act last year. Though it does not mandate EKG screenings, it requires every participant in youth sports, both at the club and school level, as well as every parent and every coach to go online annually and review the signs and symptoms of SCD. Children are removed from the field if they show any of the symptoms, and they can’t play again without the permission of a medical professional.

The American Heart Association does not support federally mandated screening, suggesting the decision should be done on a local level. The AHA also recommends that high school athletes get a physical exam and fill out a questionnaire about personal and family medical history before further testing is pursued.

Money is the biggest hurdle to mandatory testing, with opponents arguing there aren’t enough deaths to justify the expense.

“That’s crazy,’’ said Mendez, shaking her head. “Really, how much is a life worth?”

Screenings typically cost about $150, but many area doctors say they can be done for a lot less.

In South Florida, Miami Children’s Hospital began offering free EKGs for middle and high school athletes about a year ago at its main campus and seven other clinic locations in Miami, Broward and Palm Beach counties. Dr. Anthony Rossi, director of the cardiac intensive care unit, said hospital administrators thought it was an important enough screening tool to assume the costs.

“How can there even be a debate about this?” Rossi said. “This is absolutely doable. Every child in every school should have an EKG as part of a routine physical before participating in sports.”

Rossi and other cardiologists said recent studies show that SCD, though rare, is far more common among young athletes than previously thought. A 2011 University of Washington study found that the death rate among young athletes was about 1 in 43,000 — not the 1 in 300,000 cited by some groups.

SCD is usually caused by a structural defect or by troubles with the heart’s electrical circuitry. Experts say that subtle warning signs — shortness of breath, fatigue, lightheadedness and dizziness —are often overlooked by the athlete and family or misdiagnosed by a doctor.

Toti Mendez, who experienced some of those symptoms, was initially told he had a respiratory problem. Cardiologists say an EKG can detect not only hypertrophic cardiomyopathy, a thickening of the heart muscle, but other problems in the heart as well.

“About 70 percent of deaths that occur in young athletes can be prevented,” said Dr. Robert Myerburg, professor of medicine and physiology at the University of Miami’s Miller School of Medicine. “This is really something we should be doing.”

As an advocate for EKG screening of student athletes, Myerburg has spoken to legislators and the Florida High School Athletic Association about the topic, but “they just don’t get the picture. They don’t realize how important this is.”

Myerburg said an EKG can be done for much less than the typical $150 estimate. Medicare, he pointed out, pays $27 for the test and mass screenings could reduce that price further. “I don’t understand why we’re taking such a regressive position on this,” he said.

Neither can Maruchi Mendez.

“After Toti died, I visited all his doctors to ask, ‘Where did we go wrong? What could I have done differently?’” she said. “The more I found out, the more I realized that we have to make parents and schools aware that this exists but also push to get screening for the athletes.”

She hopes Toti’s story will serve as a cautionary tale for other young athletes.

“They have to understand that they’re not Superman. They need to listen to their bodies.”

Her crusade, as well as twin granddaughters born after Toti’s death, have helped her fill time. Writing the book, she said, also has made her feel closer to her youngest son. But nothing has dulled the pain of loss.

“When your child dies,” Mendez said, “you are never fully happy no matter what else is going on in your life. You are never whole again.”