The journey from child to adult care

The journey from child to adult care

When you make the journey from child to adult care it’s known as ‘transition’. The journey is different for everyone, but it always helps to have some clear information and support along the way.

Where to go for check-ups

If you were born with a congenital heart condition, you will probably need to have specialist check-ups throughout your life.

Up to the age of about 16 - 18, you will go to a specialist centre for children with congenital heart conditions (a paediatric cardiac centre). After this, you will make the journey from child to adult care. 

Why do I have to transition?

Transition is all about helping you develop the skills, confidence and independence to manage your care as an adult. This eases your journey from your paediatric clinic or hospital to your adult clinic or hospital.

The journey is different for everyone. There is no right or wrong way to make your journey from child to adult care. It’s all about what works for you.

Picture your journey

Picture Your Journey

If you're making the journey from child to adult care, this resource pack will help you to 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 you can put your own photo across the front to make them look however you like.

Order your pack

Taking charge of your heart condition

Until now your family might have managed and taken charge of your condition, so you haven’t had to think about it much yourself. Or you might feel frustrated because other people are making decisions about your health for you. 

Either way, transition is about making decisions for yourself; including decisions about your health and heart condition.

This can feel like a big responsibility. But even though it’s you making the choice, it doesn’t mean you have to do it alone. You can still talk to other adults you trust to get their opinions. Any advice from a trusted source is good advice if it helps you feel more confident about the choices you make.

One of the best things you can do to start your journey from child to adult care is to find out about your condition and understand how your heart works.

Your life, your decisions

The transition from child to adult care isn’t only about what happens in your hospital or clinic. It’s about your whole journey into adulthood and all the things you need to start thinking about along the way, like:

  • Going to university
  • Starting a career
  • Going travelling 
  • Learning to drive
  • Starting relationships

These are important rites of passage and everyone’s experience is different, but if you have a heart condition you may feel a bit anxious about taking some of these steps. It’s natural to feel overwhelmed. 

Everyone has ups and downs as they’re growing up. Many of them have nothing to do with having a heart condition. But having a heart condition sometimes brings extra stress that other people don’t experience. 

To help you, we’ve broken down the all the important information you will need to know when thinking about your next big decision. 

After all, it's your journey! 

Going to Uni

Six young people talk about the challenges of going to university and how having a heart condition shouldn't stop you from having a positive experience.

Moving on

Sinead talks to young heart patients about how you can prepare to move out of home for the first time.

Do you want to meet other young people like you?

Are you aged between 13 and 19 with a heart condition and living in the UK? You can join [email protected] absolutely free!

[email protected] is a great way to get help and support and meet other young heart patients at great events.

Find out more