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Are You “Lost”?

Did you know there are now more adults living with congenital heart defects (CHD) in Canada than children? Over the past 15 years, severe CHD has risen by 85% in adults and 22% in children. It is estimated there are now about 130,000 adult CHD patients in Canada.


CHD has traditionally been thought of as a childhood disease, but with improvements in medical and surgical intervention, and follow-up care, more and more adults are surviving well into adulthood. Many are leading very healthy lives - and are even having healthy children of their own!


As children, many CHD patients were told that they were "fixed" or "cured" and as a result, haven’t sought the care they needed as adults. But it’s a fact that at least half of all CHD patients face the prospect of complications, re-operation, and premature/sudden death. Quality of life and survival can, in most cases, be dramatically improved with on-going expert care. Sadly, there are at least 70,000 patients in Canada today who have been lost to follow-up and aren’t getting the expert care they need.


Rather than receiving their regular monitoring from adult CHD specialists, they may be seen only by family physicians, and may be referred to cardiologists and surgeons who may not be specifically trained in adult CHD.


You are one of the lucky ones! Finding this site means you are no longer lost.


How do you know if you need expert care?


According to the American College of Cardiology (ACC), heart defects are considered "simple", "moderate", or "complex", and each group has its own set of recommendations.


  • If you know the type of heart defect you have, you’ll be able to check to see whether you should be seen by an expert in adult CHD. If you don’t know the name of your heart defect, you need to talk to your family doctor or cardiologist and find out.
  • If your defect is classified as simple, you can probably be cared for in the local medical community by an internist, family doctor, or general cardiologist. It is recommended that you be evaluated by an adult congenital heart defect specialist at least once.
  • Those with moderate defects should be seen by an adult congenital heart specialist periodically, while those with complex defects should be seen regularly (i.e. every year).
  • You can read more about congenital heart defects by clicking HERE.


If you know anyone else who might be "lost", please lead them to this website. Finally, help us raise awareness about CHD – spread the word!