HCM: Questions to ask

While a jury awarded Tony and Angela Key, $1.6 million following a malpractice trial in the death of their 22-year-old son, Antwoine, a basketball player for Eastern Connecticut State University who collapsed and died during a game in 2005, it is a small measure of solace when a young life is cut short, particularly when the cause - hypertrophic cardiomyopathy (HCM) - could have been treated, had it been properly diagnosed.

“As parents, the most important first step we can take has little to do with our children and more to do with our family trees. Knowing your personal health history and those of your immediate family members may lead to clues about heart disease that may impact your children.”

The malpractice occurred during a pre-college physical. Antoine's doctor noted he had a heart murmur, but rather than conduct testing to determine its cause, cleared him to play.

HCM, a genetic heart disease which causes the heart to become thickened and may alter its ability to beat properly, is far more prevalent than you may think. It affects one in 500 Americans. Moreover, it is the leading cause of sudden cardiac death among young athletes; both professional and amateur.

HCM may have no outward symptoms and the first symptom can be sudden death, however, there are signs including shortness of breath — with or without exercise — dizziness, chest pain or pressure, fainting, palpitations, and fatigue. Tracking family history of heart disease is also recommended. Regardless of whether symptoms are prevalent, screening for HCM is fairly easy via a simple electrocardiogram (EKG).

Dr. Martin Maron, one of the world's leading experts on HCM, points to Europe where in many countries EKGs for young athletes are mandatory. "Among their athletes, HCM-related sudden death is almost nonexistent," Maron said. "Here, in America, it's the most common cause."

The Hypertrophic Cardiomyopathy Association (HCMA), is a non-profit organization for HCM patients, their families and health care providers, has been advocating for better screening since its inception in 1996. "As parents, we encourage our children to participate in athletics and organized sports, however are we doing enough to ensure that they are healthy enough to be playing?," said Lisa Salberg, founder and CEO of the HCMA.

"The average pre-participation sports screening does little more than ensure that children and teens have no outward illness or abnormality," she said. "The use of a stethoscope may appear to be 'checking' your child's heart, but it's subpar.

"As parents, the most important first step we can take has little to do with our children and more to do with our family trees. Knowing your personal health history and those of your immediate family members may lead to clues about heart disease that may impact your children."

Salberg and Maron suggest that you ask yourself these questions; if you do not know the answers, search for them within your family:

• Has anyone in the family died under the age of 50 unexpectedly?
• Has anyone in the family died of heart disease under the age of 50?
• Has anyone in the family survived a cardiac arrest?
• Does your child or other family member have a history of athletically/exercised induced asthma?
• Has anyone in the family been diagnosed with heart disease, a heart murmur or unexplained fainting?
• Has anyone in the family been diagnosed with HCM, cardiomyopathy, Long QT, ARVD, or Marfans?

Knowing the answers to these questions -- in addition to the traditionally-asked questions on pre-participation screening forms -- may save a life.

"We must listen to our hearts," said Salberg. As a nation, we need to grapple with serious issues about the role of athletic screenings and how to protect not only elite athletes, but all children who play sports recreationally.

"Should we be offering more testing prior to participation in sports? Should all children receive electrocardiograms to evaluate the electrical function of the heart? Should we be more aggressive about following heart murmurs in children with echocardiograms? Should we demand that external automated defibrillators be at every athletic event and in every school?

"Antwoine's death should not be in vain. It should serve as a wake-up call. Asking the right questions and conducting the proper follow-up tests can not only save the lives of our athletes and children - it can even save your own."