A Mother Remembers Her Son, Undiagnosed with HCM

A table setting at a recent Children’s Cardiomyopathy Foundation function honoring Dorien “DJ” Garnett, who died of sudden cardiac arrest in May, 2009, and was later diagnosed with hypertrophic cardiomyopathy. | Courtesy Carmina Taylor

Heart disease can take more commonly known forms, such as a heart attack or stroke, or manifest itself in more insidious ways, as hypertrophic cardiomyopathy (HCM), a silent — sometimes deadly — thickening of the walls inside a heart. In her own words, here is the story of Carmina Taylor, 46, a consultant in Philadelphia, PA, whose son, Dorien Garnett, died of HCM at age 17 in 2009.

I’ll never forget it. It was May 8, 2009, and my son Dorien — we called him DJ — was with his dad and my younger son, Taylor Garnett, in Boston, where DJ was competing in a basketball tournament. I remember I had spoken to DJ on the phone at 5 p.m. Then, at 8 p.m. I got a call from Taylor telling me DJ had passed away.

I was in disbelief; I had just spoken to my son three hours before. I drove from Philadelphia to Boston that night, and when I got to the morgue I saw the most horrible sight a mother could see. My son’s body was cold, so cold that the only place on his body I could kiss him to say a final goodbye was his hair. I talked to the doctors, who couldn’t really explain why my son had suddenly died, except that the indication was that he had some kind of heart failure.

They said they would perform an autopsy, which took six agonizing weeks before it was completed and the results were released. When the autopsy was done, they determined that DJ had hypertrophic cardiomyopathy, a disease I had never heard of before.

I have since learned that there was a history of heart disease on both sides of DJ’s family, one relative on my side had it, two on his father’s side. But my son had played sports his whole life and nothing — not an irregular heartbeat, not shortness of breath — had come up in physicals.

We now know that HCM is a genetic mutation of the heart. My son was born with an enlarged heart and over time the ventricles grew thicker and the moment my son died was that the moment that his heart could not pump any more blood through its ventricles.

Once I found out that my son died of HCM, I immediately took my younger son and myself to a cardiologist to get tested to see if we had it. The tests revealed that we didn’t; so it was my husband who was the carrier of HCM.

I’ve since become an advocate for encouraging families with histories of heart disease to dig deeper and ask questions about what type of heart diseases they have had. I don’t want other families to go through what I did. For the past nine years I’ve been involved as a parent ambassador with the Children’s Cardiomyopathy Foundation (childrenscardiomyopathy.org). Our goal is to conduct a mobile tour to travel to around the Philadelphia region to educate minority communities about HCM. There’s no cure, but perhaps we can prolong lives if the disease is detected and treated early.

I’ll always think of my son DJ as a hero. I realize now that he was probably experiencing symptoms of heart disease, but he never articulated them at all. It’s up to us as parents to ask the questions, of ourselves, and our families.

By Carmina Taylor as told to James Harney

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