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What We Can Learn From The Heartbreaking Loss of Caleb Bratayley

The death of a child is an unspeakable tragedy. When 13-year-old YouTube star Caleb Logan Bratayley unexpectedly died last week, it captured the attention of millions of young teens and their families.
10/12/2015 11:48am ET | Updated October 12, 2016
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The death of a child is an unspeakable tragedy. When 13-year-old YouTube star Caleb Logan Bratayley unexpectedly died last week, it captured the attention of millions of young teens and their families. Caleb's family told ABC News that the family has a history of hypertrophic cardiomyopathy, a serious heart condition that is often overlooked but can cause abnormal and deadly heart rhythms.

In a family statement posted on Instagram, the Bratayley's asked, "How and why could this happen to a seemingly healthy boy?" This is a question many families who have lost a child to sudden cardiac arrest ask. "Seemingly healthy" can be deceiving with a child at-risk of a life-threatening heart disease. According to the American Heart Association, 1 in 350 children have dangerous underlying heart conditions. Many undiagnosed children have cardiomyopathy, a chronic disease of the heart muscle that is a leading cause of sudden cardiac arrest in children under 18.

Sudden cardiac death is usually not something on the minds of most busy parents, but tragically it happens far more often than many realize. With reports of young people dying of heart conditions on the rise, estimates have been as high as 1 death every 3 days. Many of these children appear healthy and have no symptoms. Tragically, sometimes the first symptom of the disease is sudden cardiac arrest.

We do know that cardiomyopathy runs in families, like in Caleb Bratayley's case. His death comes just one day after Children's Cardiomyopathy Awareness Month, and his heartbreaking loss is a reminder that understanding your family's heart history can mean the difference between life and death for at-risk children. With October as Sudden Cardiac Arrest Awareness month, now is the time to take a few minutes to talk about your family's heart health and understand your family's risk factors.

• Are there any family members under the age of 50 who have died suddenly or are disabled from heart disease?
• Have any family members been diagnosed with cardiomyopathy or other conditions that affect heart rhythm?
• Do you or your child ever have chest pain or discomfort during physical exertion?
• Have you or your child ever fainted or experienced excessive or unexplained fatigue associated with exercise?
• Do you or your child have a history of heart murmur or high blood pressure?

If any of the above risk factors are present, a cardiologist should perform a more extensive cardiac evaluation. Parents can be proactive by knowing the warning signs and symptoms of cardiomyopathy and communicate any concerns to their child's pediatrician. Common symptoms include shortness of breath, rapid breathing, fainting, chest pain, dizziness, heart palpitations, and extreme fatigue. Babies may have poor weight gain, have difficulty feeding and show excessive sweating.

It is not uncommon for symptoms of cardiomyopathy to be mistaken for a common cold, flu, asthma, or a stomachache. Knowing the signs, symptoms and risk factors associated with cardiomyopathy is the first step a parent can take to protect their child from sudden cardiac arrest. If this sometimes silent killer is detected early, premature death can be prevented.

Lisa Yue, founder and executive director of the Children's Cardiomyopathy Foundation (CCF), lost two young children to cardiomyopathy. She and her husband, Eddie Yue, established CCF with the purpose of stimulating and funding research on the disease, educating and assisting physicians and patients, and increasing awareness and advocacy related to the needs of affected children and their families. Follow the Children's Cardiomyopathy Foundation on Facebook and Twitter.