What does my baby's diagnosis mean?

Girl with mum outdoors

If you have just received the upsetting news that your baby or child has congenital heart disease, you probably have lots of questions.

This information shouldn’t replace the advice your doctors or nurses give you, but help you understand what they say.     

Why does my child have congenital heart disease?

It’s common for parents to blame themselves. Feelings such as anger, disappointment, fear and guilt are all normal feelings to have when you are told that your child has a heart condition.

It’s important to understand it is not your fault. Congenital heart disease is diagnosed in 1 in 180 babies in the UK – that’s around 12 babies every day.

For many children, their condition can be successfully corrected with surgery or managed with medications or minor procedures. But for some it is a lot more serious, and they will need multiple surgeries, procedures and care.

The good news is, that thanks to advances in diagnosis and treatment, most children now survive into adulthood and can have a good quality of life. 

Check-ups at specialist centres

Your child will need check-ups at a specialist centre for congenital heart disease throughout their life.

Up to the age of 16, these will usually happen in a paediatric clinic. Most commonly, between the ages of 16 and 18 your child will transition into adult care.

If you have to travel far for the specialist centre, it may be possible to arrange for your child to be looked after under a ‘shared care’ system. Some hospitals have paediatricians who are specially trained in cardiology. This means that your child can be followed up locally, but they will still need to go to their specialist centre for certain appointments and treatment.

The specialist team

At the specialist centre, several different types of health professionals (as part of a multidisciplinary team) will be involved in caring for your child and your family’s needs.

This team usually consist of:

  • 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 them 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.

The specialist centre may also have counselling services which you can use to help to support your child and your family during difficult times.

Transitioning to adult care

As your child grows up, it's important they continue going to a specialist centre for check-ups. There are several specialist centres in the UK for adults with congenital heart conditions.

Their care will be transferred to an adult specialist centre usually between the ages of 16-18. These centres usually have a multidisciplinary team with the same mix of professionals as in the children’s specialist centre.

When your child is nearing adulthood, your specialist paediatric centre will start preparing you both for the transition. This help to make the change from child to adult care as smooth as possible.

Picture your journey

Picture Your Journey

If you're child is making the journey from child to adult care, this resource pack will help them keep your medical contacts, appointments and health care information together in one place. It contains three booklets with information about transitioning:

  • My Transition
  • My Life 
  • My Inspiration

all contained in a sturdy box. Best of all, the box and each booklet is covered in a clear plastic wallet, so they can put their own photo across the front to make them look however they like.

Order your pack

Coping with everyday life

Having a child with a heart condition in hospital can feel very difficult. Often, you’ll be faced with:

  • caring for your child in hospital
  • anxieties about the treatment your child may need
  • concerns about their recovery

You might also worry about being away from home, or the rest of your family. Dealing with work or finance can also become overwhelming for some people. Find out more about how you can manage your finance and the available benefits.

Hospital staff are there to support you and your family through stressful times. You can ask them about the services available within the hospital, such as:

  • counselling
  • welfare rights advice
  • social issues

Affected by heart disease