Children and HCM: What Parents Need to Know

Hypertrophic cardiomyopathy (HCM) isn’t just a condition that affects adults—it can also be diagnosed in children, including infants. For parents, hearing that their child has a heart condition can be overwhelming. But with early diagnosis, proper treatment, and ongoing care, many children with HCM go on to live full, active lives.

This guide will help you understand how HCM presents in children, what symptoms to watch for, and how to support your child through diagnosis and treatment.

What Is HCM?

HCM is a genetic heart condition that causes the heart muscle, particularly the left ventricle, to become abnormally thick. This thickening can:

Make it harder for the heart to pump blood
Interfere with normal heart rhythms
Lead to complications like heart failure or, in rare cases, sudden cardiac arrest

It is often inherited, which means that if someone in the family has HCM, other family members, including children, may also be affected.

Symptoms of HCM in Children

In Many Children: No Symptoms

Many children with HCM have no symptoms at all, especially in the early stages. This makes regular screenings critical, particularly if there’s a known family history of HCM or sudden cardiac death.

When Symptoms Appear

When symptoms are present, they can range from mild to severe and may include:

Fatigue
Shortness of breath
Chest pain
Dizziness or fainting
Irregular heartbeats (palpitations)

Some children may initially be misdiagnosed with conditions like asthma, especially if shortness of breath is the main complaint.

Infants and HCM

Babies under one year old may show signs of congestive heart failure, which can be harder to recognize. Symptoms in infants may include:

Difficulty breathing, especially during feeding
Poor weight gain or growth
Excessive sweating (especially on the head or during feeds)
Fussiness or crying during feeding

Tip: If you notice any of these symptoms, especially in a baby with a family history of HCM, consult a pediatrician or pediatric cardiologist.

How Is HCM Diagnosed in Children?

If HCM is suspected, a pediatric cardiologist will typically perform several tests, including:

Echocardiogram (heart ultrasound): To assess heart muscle thickness and function
Electrocardiogram (ECG): To detect abnormal rhythms
Genetic testing: To look for inherited mutations, especially if there’s a family history
Holter monitor: To monitor heart rhythms over time

Screening is often recommended for children with a parent or sibling diagnosed with HCM, even if they appear healthy.

Treatment Options for Children with HCM

There is no cure for HCM, but treatment focuses on managing symptoms and preventing complications.

Common Treatment Approaches:

Medications: Such as beta blockers or calcium channel blockers to help the heart relax and reduce symptoms
Lifestyle adjustments: Limiting intense physical activity if there’s a risk of arrhythmias
Implantable cardioverter-defibrillator (ICD): In children at high risk of sudden cardiac arrest
Surgery or septal ablation: Rare in children but may be considered in severe cases

Each child’s care plan should be personalized by a team that includes a pediatric cardiologist and, when needed, an electrophysiologist (a heart rhythm specialist).

Living with HCM as a Child

Most children with HCM can lead relatively normal lives when they are properly diagnosed and treated. However, an HCM diagnosis may affect several areas of life:

Physical Activity

Some children may need to avoid competitive sports or strenuous exercise. Your cardiologist will help determine what level of activity is safe.

Emotional and Social Impact

A heart condition can cause anxiety or make a child feel “different.” It’s important to:

Encourage open conversations
Connect with pediatric HCM support groups
Work with schools to ensure appropriate support and accommodations

Ongoing Monitoring

Regular follow-up appointments are critical. As a child grows, their heart structure and symptoms can change. Monitoring may include yearly or biannual imaging, ECGs, or wearable monitors.

Tip: Keep a dedicated medical folder or digital record with test results, prescriptions, and questions for your child’s cardiology visits.

Support for Families

An HCM diagnosis affects the entire family. Parents may experience stress, fear, and uncertainty. Support resources include:

Pediatric HCM advocacy groups
Genetic counselors
Social workers or therapists specializing in chronic illness
Parent support networks

Remember: You’re not alone. Many families are navigating this journey—and there is a growing network of professionals and resources to help.

Conclusion: Early Detection Saves Lives

Hypertrophic cardiomyopathy in children can be serious, but with early diagnosis and expert care, outcomes are often very good. Stay alert to symptoms, know your family history, and don’t hesitate to ask your pediatrician about heart screening if you have any concerns.

Your vigilance today can protect your child’s tomorrow.

By Jessica Daniels, BDO Staff Writer | Published May 24, 2025