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Children’s Cardiomyopathy: A Family Affair

By Aly Peacy

One day, when my son Dean was just seven weeks old, his grandma was over for a visit. She held him as we chatted, but I had a hard time following the conversation. I was noticing that Dean’s head was bobbing unnaturally, and I heard an unusual grunting sound as he labored to breathe.

I didn’t realize it then, but my son had a rare cardiovascular disease known as cardiomyopathy. It was the same disease that my husband Kyle was diagnosed with nearly 30 years prior, a disease that affects 12 children out of every million.

That day I rushed Dean to the emergency room, where the doctor delivered unthinkable news. My infant son was in heart failure.

Dean was intubated for two weeks and remained in the hospital for a month. It was a scary time for our family. Instead of cuddles on the couch with our new baby, it was tests and labs in a sterile hospital. We learned the left ventricle of Dean’s heart was enlarged, causing decreased blood flow through his body.

I knew my husband had been diagnosed with cardiomyopathy as a child. He takes medication for it to this day. But we didn’t have a reason to suspect that Dean also had it. I had a normal pregnancy. Dean looked healthy on the ultrasound. His delivery was fine, and we went home on schedule. I learned later that cardiomyopathy is hard to spot before birth. Even still, I felt guilty seeing my child suffer.

Fast forward three years. Today, Dean’s condition is well managed with the help of four medications. Daily vigilance is the norm for our family. Even before COVID-19, we were mindful about who he was around. He can’t play, like other kids do, with just anyone at the park. We need to be aware of every interaction, because even a common cold has landed Dean back in the hospital.

We do, however, help him live as normal a life as possible. He still gets to horseplay with his older brother, though he sometimes gets winded easily. He also attends a preschool with other children who are immunocompromised. I’m thankful for the safe environment and friends he has there.

But we face a future marked by unknowns. Will Dean be able to play sports? Will he eventually need a heart transplant? I don’t know. It’s too soon to tell.

What I do know is that it’s important to share our family’s story.

I share it now, during Children’s Cardiomyopathy Awareness Month, to encourage new parents to be aware of the signs of cardiomyopathy. I urge them not to delay seeking care if their baby is having trouble breathing.

I’ve also become an advocate of genetic testing for parents who have a history of the disease. Knowing Dean had the biomarker would have saved us a lot of heartache and a long hospital stay.

My son, like my husband, is in for a lifetime of medications and monitoring. But I’m grateful both of them received excellent care, a timely diagnosis and immediate access to medication. It’s time to make that true for every family.

Aly Peacy lives in Grand Rapids, Michigan and is a regional ambassador for the Children’s Cardiomyopathy Foundation.