Build Your Care Team
Your Cardiology Team
Your child's cardiology team is there to protect heart function — not because something is wrong, but because staying ahead matters.
When most parents hear they need to see a cardiologist, it's natural to worry that something must already be wrong with their child's heart.
In most cases, that's not why you're there.
One of the unique things about Duchenne is that it affects not only the skeletal muscles we use to move, but also the heart muscle. Because of this, heart care becomes an important part of your child's lifelong health — even if they have no symptoms at all.
The goal of your cardiology team is not simply to treat heart problems. It's to monitor your child's heart carefully, identify changes as early as possible, and protect heart function for as long as possible.
Many children with Duchenne begin seeing a cardiologist soon after diagnosis and continue with regular follow-up visits throughout their lives.
Who You May Meet
Not every clinic is organized the same way, but your cardiology team may include:
Pediatric Cardiologist
A physician who specializes in caring for children's hearts. They monitor heart function, recommend medications when appropriate, and help guide long-term cardiac care.
Adult Cardiologist
As your child transitions into adulthood, care may shift to a cardiologist who specializes in adult heart conditions while continuing to monitor Duchenne-related heart health.
Cardiac Nurse or Nurse Practitioner
Provides education, reviews medications, answers questions, and helps coordinate your child's cardiac care.
Cardiac Sonographer
Performs echocardiograms (heart ultrasounds) to evaluate how the heart is working. Although you may not spend much time talking with them during the test, they play an important role in collecting information your cardiologist will review.
Cardiac MRI Team
Some children and young adults will have cardiac MRI scans as part of their routine care. These studies provide detailed images of the heart and can sometimes detect changes before they are visible on other tests.
Electrophysiologist (Occasionally)
A cardiologist with additional training in the heart's electrical system. Most families will never need to see one, but they may become involved if heart rhythm concerns develop.
Pharmacist
Helps review heart medications, explain how they work, and identify possible interactions with other treatments.
Common Tests You May See
Your cardiologist may recommend tests such as:
These tests help establish a baseline and monitor your child's heart over time.
Questions You May Want to Ask
You don't need to ask every question at your first visit. Start with the ones that matter most to your family.
- Is my child's heart functioning normally right now?
- How often should we schedule cardiology visits?
- What testing will my child need, and why?
- Are there medications you recommend now or in the future?
- Are there symptoms we should watch for between visits?
- How might Duchenne affect my child's heart over time?
- How do cardiac medications fit into my child's overall treatment plan?
- Will any of my child's other treatments affect their heart?
- Who should we contact if we have questions after today's appointment?
Before You Leave the Appointment
Before heading home, make sure you know:
- When your child's next cardiology appointment should be
- Whether additional testing has been ordered
- Whether any medications have been recommended
- What symptoms should prompt you to call the office
- How to contact the cardiology team with questions
What We Wish
Someone Had Told Us
Honest advice and lessons learned from Duchenne families who've been there.
We were scared when we heard our child needed a cardiologist. We assumed it meant something was already wrong. It didn't.
We learned that one of the greatest strengths of Duchenne care is that it doesn't wait for problems to appear. Your cardiology team is there to protect your child's heart — not because it's failing, but because keeping it healthy for as long as possible is one of the most important things you can do.
Looking back, those appointments became reassuring. They reminded us that we weren't waiting for something to happen — we were doing everything we could to stay one step ahead.