Become an expert on your heart

hui-buh /

In addition to all the normal things that parents nag about, like eating habits, sleep and what to wear, you also have a heart that needs follow-up care. It is very important that you gain enough knowledge to be responsible for your own heart – the more you know the better!

You probably already have a rough idea of what a normal heart looks like and how it works, but what do you know about your own heart? About eight in every 1,000 people are born with a congenital heart defect. Congenital heart defects can have varying degrees of severity and a wide range of symptoms. With a bit of research you can find out a lot of information on your own, but remember every case is unique. Don’t be surprised if you meet people with the same diagnosis as yourself, but with completely different levels of functioning and symptoms.

What do you need to know about your heart defect?

This list includes the most important things you should know about your own heart defect:

  • What is it called?
  • Where is it and what does it look like?
  • How is it fixed?
  • What does my heart look like now?
  • How do I know if my condition gets worse?
  • What do I do if it does?
  • Why is it so important to see a cardiologist?
  • How often will I need a check-up?
  • How do heart defects occur?
  • Is it inheritable?
  • What should I know about my heart defect during adolescence?
  • Do I need to consider my heart defect when choosing a career?

You have a say

Even though it doesn’t always feel like it, you are entitled to make a lot of decisions about your own life.

  • You have the right to say how you feel about visits to the doctor and the hospital, and the diagnosis and treatment of your heart
  • You should be consulted and listened to before any decisions are made regarding your heart
  • From the age of 12, you can normally ask to see the doctor alone, in addition to the consultations with your parents
  • From the age of 16, you do not need to tell your parents that you have been to the doctor
  • You have the right to have your parents with you when your are hospitalised until the age of 18
Author(s): Marit Haugdahl
Last updated: 2010-10-07

Do you want to tell us about your experiences? Leave a comment on this article.