Whether your child has just been diagnosed, or has been for a while, you are not alone.
"At first it's really difficult to get your head around, but life does get back to some sort of normality."
Parent of child with cardiomyopathy
A Quick Explanatory Animation for Children
If your child has been diagnosed with cardiomyopathy, it can feel overwhelming at first. This short animation is here to help you understand the basics in a simple and reassuring way.
In under two minutes, you'll learn:
- What cardiomyopathy is
- How it affects the heart
- What it might mean for your child’s health
Every child is different—some may only need regular check-ups, while others need more medical support. This video gives you a clear starting point to better understand the condition and what comes next
Understanding Your Child’s Diagnosis
Cardiomyopathy is a condition that affects the heart muscle, and there are many possible reasons why it may develop. In some cases, doctors may not be able to identify an exact cause, which can understandably feel frustrating or worrying.
Sometimes, cardiomyopathy runs in families and is passed down genetically from parent to child. It can also develop during pregnancy while the baby is growing in the womb, even if there is no family history of the condition.
Other possible causes include:
- Viral infections that affect the heart, such as certain types of flu or other viruses
- Autoimmune diseases, where the immune system mistakenly attacks healthy parts of the body, including the heart
- Exposure to certain medications or toxins that may affect the heart muscle
To understand what might have caused your child’s cardiomyopathy, doctors will usually ask detailed questions about your family’s medical history. They may also carry out a range of tests, such as blood tests, heart scans, or genetic testing, to try and find out more.
Sometimes, even after all these tests, the cause remains unknown. This is known as idiopathic cardiomyopathy, and while it can be hard not to have a clear answer, your child’s care team will focus on providing the best possible treatment and support based on their individual needs.
Understanding Your Child’s Care Team
Most children with cardiomyopathy are looked after by a team of medical professionals. Depending on your child’s age and needs, their care may be led by:
- A Paediatrician (a doctor who specialises in children's health)
- A Paediatric Cardiologist (a doctor who specialises in children's heart conditions)
- A Cardiologist (a heart specialist, usually involved as children grow older or move into adult care)
Appointments may take place at your local hospital or at a specialist heart centre. How often your child is seen will depend on their individual situation, but it’s common for follow-up appointments to happen every six months. If your child’s condition changes, they may be seen more often.
Your child’s usually provides ongoing day-to-day care between hospital visits. They can help with general health concerns, prescriptions, and monitoring your child’s condition in coordination with the hospital team.
How we can support parents, carers and families
Join our Thriving with your child’s Cardiomyopathy online course
A four-week online programme for parents and carers of children with cardiomyopathy. Join a supportive group where each session is designed to help you feel more informed and empowered. The programme is delivered by a qualified counsellor who also has lived experience as a parent of a child with cardiomyopathy.
Email: services@cardiomyopathy.org for more information
