My 5-year-old child is taking an interest in his healthcare

A recent cardiology appointment was pivotal for my son with Pompe disease

by Keara Engle | December 5, 2023

Last week, my 5-year-old son, Cayden, had a checkup with his cardiologist, the specialist who monitors his heart. Cayden has been seeing a cardiologist since he was just 1 month old. Back then, his heart was severely affected by his infantile-onset Pompe disease. It has since corrected itself, but the doctor still follows up with him once a year to ensure everything looks normal.

When he was a baby, Cayden would scream, cry, and get so worked up when the team performed an echocardiogram, or ultrasound of his heart. Although it’s painless, I can understand why a baby or young child would be uncomfortable during the procedure. I remember how uncomfortable and annoying ultrasounds were during my pregnancy, and I can’t imagine what it’s like for someone so little.

More recently, Cayden stopped crying and making a big deal about his echocardiograms. Before, he’d usually just lay there and watch the television mounted on the wall in front of the bed. But he never seemed interested in what was going on.

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But at last week’s visit, his behavior was different. Cayden asked the ultrasound tech questions about his heart, such as, “What does it look like?” This query prompted the tech to turn the screen toward Cayden, so he could see for himself.

Cayden then asked, “Is my heart big and strong?”

I replied, “Yes, honey, your heart is big and strong!”

A young boy lies on his back on a hospital bed while a technician performs an echocardiogram. The boy's shirt is pulled up to his chest, and monitors are attached to his abdomen. The technician guides the ultrasound monitor over the boy's heart while the boy looks at the image on the screen.

Cayden watches the screen during his latest echocardiogram. (Photo by Keara Engle)

A proud mom

It may seem like a small interaction, but to me, it meant the world. There’s no simple way to describe how it feels to see my child, who’s been through so much medically, take an interest and ask about his healthcare. I’m so used to screams and cries at Cayden’s doctor appointments, but it’s finally getting better. He’s not experiencing as much anxiety as he did before.

I was nervous that he’d be upset about having to go through so much more than most children his age, but he’s accepting it fairly well. I’m proud of him for asking questions and taking the initiative to want to see his own heart. Considering how young he is, that’s pretty amazing.

Thankfully, everything went as expected. Cayden’s heart is, in fact, big and strong. He’s doing fantastic from the standpoint of cardiology, so much so that the doctor told us that we don’t have to return for 12-18 months. I’m eager to see what new questions Cayden will have at his next cardiology appointment. I’m sure the list will be much longer by then.

Note: Pompe Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pompe Disease News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Pompe disease.

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About the Author

Keara Engle Keara Engle is located in south-central Pennsylvania and has lived there her whole life. Keara is a single mother and has two little boys, Cayden and Kyree. Her oldest, Cayden, was born in February 2018 and was diagnosed with infantile-onset Pompe disease shortly after. He was the first baby in Pennsylvania diagnosed via newborn screening. She hopes that her column, “Powering Through Pompe,” will bring comfort to those that are also dealing with Pompe disease. She remembers how scary it was when her son was first diagnosed and wants to help guide others through their journey.

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