Adult congenital heart disease

Adult congenital heart disease (ACHD) refers to heart conditions that people are born with but continue to affect them across their lifespan.

Congenital heart disease is the most common birth defect worldwide. About one in every 100 babies is born with a congenital heart issue. Sixty years ago, fewer than 20 per cent of children with congenital heart defects reached adulthood. Today, it’s more than 90 per cent. Because of these incredible scientific advances, there are now more adults living with congenital heart disease than children. In BC, children with congenital heart issues are treated at BC Children’s Hospital. When they turn 18, their care is transferred to St. Paul’s Hospital.

ACHD includes various irregularities in the structure of the heart and/or blood vessels including things like:

• Irregular connections between heart chambers
• Blood vessels connected in usual positions
• Abnormal heart valves
• Blockages within heart structures

Patients with congenital heart conditions require long-term follow up from a cardiac team that specializes in the management of congenital heart conditions. If you are referred to us, you can expect that your initial appointments will include:

• Tests to evaluate your heart and its function
• Assessment and education to support you in managing your heart condition
• Assessment and evaluation from a Cardiologist specializing in congenital heart conditions who will plan with you how to best manage your heart condition

VPACH Clinic 

At your clinic appointment, you will receive a continuation of the assessments and monitoring of your heart condition. Our medical team uses various tests to determine how to best manage your heart condition. These tests can also be used to diagnose congenital heart disease in adults who were not diagnosed as children. 

All the information you need about these tests can be found in the links below. This includes contact information, location of the test, how to prepare, and what to expect. If you’re not sure what test you’re scheduled for, please contact your doctor.

There are many different kinds of heart problems that a person can be born with. Therefore, the monitoring and treatment they receive can vary depending on how severe the condition. Some patients just need to go for regular check-ups and don't need any special treatment. Others might need more frequent monitoring and treatment including surgeries.

Clinics that treat ACHD

Providence Health Care operates the only clinic in BC for adults with congenital heart issues. All the information you need about this clinic at St. Paul's Hospital can be found in the link below. This includes contact information, location of the clinic, operating hours, how to prepare, and what to expect.

Related heart surgeries & procedures

The surgical teams at St. Paul’s Hospital perform over 1,000 heart surgeries a year. And many more non-surgical procedures. For some people with ACHD, multiple cardiac surgeries may be necessary during your lifetime. These are the cardiac surgeries that may be relevant to your care.

The Indigenous Wellness Liaison Team is here to support your health journey. Team members offer cultural support and healthcare advocacy. Learn more below or call them at 604-682-2344,62937 or email IWL@providencehealth.bc.ca.

Patient-centred help, resources and education about ACHD come from many sources. Some of them listed here are supplied by St. Paul's Hospital (SPH) and Providence Health Care (PHC), but other useful resources about ACHD are available from the community and from online supports.

Advances in congenital heart disease treatments are all thanks to medical research. While participating in research is a decision you should make for yourself in consultation with your care team, there is much activity in this area so please ask us about our research programs if you’re interested.

By taking part in research, you can help us all learn more about ACHD and find better ways to help people like you live and thrive with the condition. While you cannot assume benefit to yourself, your participation can make a difference in improving care for future patients.

The following clinical trials are currently enrolling volunteers. Please ask your care team for more information or contact the research team listed on each study or trial. For other information about research at Providence Health Care, please visit Providence Research.