Caring for a child with heart disease

Heart conditions in children

If you are the parent or carer for a child or young person with a heart or circulatory condition, it is normal to worry about medical and practical issues as your child grows up.

We have lots of information and advice to support you caring for your child. 

 

Understanding your child’s condition 

Sometimes, a child is born with problems in their heart or circulatory system.

Some of these conditions develop while a baby is growing in the womb. These are known as congenital conditions. In the UK, around 12 babies are born each day with a congenital heart problem.

Other conditions may be inherited from a parent's genes. These might cause difficulties from a young age, or develop into a problem later in life.

Congenital and inherited conditions may require treatment like medicines or surgery, sometimes at a young age. Talking to your child’s medical team can help you to understand your child’s condition, and what might be required to keep them healthy.

We also have lots of information about the causes, symptoms, tests and treatments for heart and circulatory diseases. We also have information specifically about health-related issues in children and young people.

This includes our:

Who might be involved in my child's care?

In most cases, several different types of healthcare professional will work as a 'multi-disciplinary' team to care for your child and your family's needs. This team will usually include:

  • a consultant paediatric cardiologist
  • a specialist registrar (a doctor specifically training in children’s heart problems)
  • a cardiac nurse specialist or cardiac liaison nurse
  • a consultant paediatric surgeon or paediatric cardiothoracic surgeon
  • cardiac technicians
  • a paediatric physiotherapist
  • a paediatric dietitian
  • ward-based paediatric nurses
  • a social worker
  • an occupational therapist
  • a speech and language therapist
  • a play specialist.

Your child may not need to see them all, but it's good to know who's available to help with any problems. For example, a social worker can help explain what benefits you might be entitled to, and whether you can claim any travel expenses.

You may also be have access to counselling services, which you can use to help to support your child and your family during difficult times.

Information about practical and everyday issues

You may have everyday worries about practical things relating to your child’s health, and its impact on you and your family.

For some people, this can include problems with work, finances and benefits, or finding the time to care for your child. 

We have more helpful information, such as:

Information for children and young people

We have lots of helpful information especially written for children and young people living with heart and circulatory diseases

This useful advice covers things like sex and relationships, stress and anxiety, and transitioning into adult care.

We also have a support programme for young people with heart and circulatory conditions. This includes regular events held around the country, offering the chance for young people to meet others in a similar situation.

Further support

These are other charities which help children with heart and circulatory conditions, and their families. They can offer further information, advice and support for your situation:

 

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