More people survive congenital heart disease, Quebec doing well in specialized care

People diagnosed with congenital heart disease — a heart defect that is present at birth — are more likely to survive thanks to medical advances in recent years, a report released Tuesday by Heart & Stroke foundation. However, these people need medical monitoring throughout their lives, and the availability of care is not keeping pace.

Congenital heart disease is characterized by abnormalities in the structure of the heart. It can affect the valves, vessels, walls or chambers of the heart. About a quarter of cases of congenital heart disease are serious and affected babies require medical intervention during the first year of life.

Since the 1970s and 1980s, significant advances in care and screening have increased the survival rate of people born with heart defects. For example, imaging tests can better detect them. “The vast majority of diagnoses are now made prenatally, meaning that heart defects are detected while the baby is still in its mother’s womb,” says Dr. Gregor Andelfinger, pediatric cardiologist at CHU Sainte-Justine and spokesperson for Heart + Stroke.

Additionally, these days, procedures are minimally invasive. Catheters can be inserted into a blood vessel and brought up to the inside of the heart where the doctor will deploy his tools, for example to unclog vessels or close holes. This way, the doctor does not need to open the chest for an operation.

“The survival rate has improved so quickly that today there are more adults than children with congenital heart disease. That’s fantastic news,” says Dr. Andelfinger. “I’ve been doing this for 30 years and it’s incredible how the specialty has changed. One in 100 babies is born with congenital heart disease and about one in 1,000 babies need surgery. The survival rate is well over 90 per cent. Not for all lesions, but it’s completely changing the landscape.”

Better survival rate, more cardiologists needed

Heart + Stroke notes that the number of cardiologists treating adults with congenital heart disease has not increased at the same rate as the number of patients. There is also a shortage of other health care personnel to ensure adequate medical follow-up.

“The workload is increasing in number, but above all the workload is increasing in intensity. Today, in 2025, it is considered a routine procedure, for example, to have children with a mechanical heart. This was not the case 15 or 20 years ago. So, it takes specialists who have cutting-edge training. And the workload is growing much faster than the number of specialists serving the population,” says Dr. Andelfinger.

The pediatric cardiologist asks the authorities concerned to “make available the number of nurses, technologists, specialized personnel and doctors who are required to care for this population.”

The Heart & Stroke report also notes that “Indigenous people with congenital heart disease who seek care may face additional and disproportionate barriers.” For one thing, certain types of congenital heart disease are more common in this population. They are also less likely to be recommended for prenatal screening and therefore less likely to be diagnosed before birth.

Indigenous people are also more reluctant to attend medical appointments because of racism in the health-care system, the report notes. A shortage of Indigenous health-care providers is another barrier, but efforts are underway to increase the number of Indigenous medical students in the country. However, this is a long-term goal since it takes 10 to 12 years to train a cardiologist.

Cardiologists travel to the regions

Congenital heart disease is associated with a higher risk of developing heart problems, cognitive problems, depression and anxiety, among others. It doubles the risk of stroke and there is a nine to 13 times higher risk of heart failure, even in younger people and those with a less complex disorder.

These people need long-term medical support. Canada has 32 centres specializing in congenital heart disease, including four in Quebec (Sherbrooke, Quebec City and Montreal). Access appears to be uneven across the country, according to the Heart & Stroke report. It states that only a quarter of adults with congenital heart disease in Canada benefit from follow-up in a specialized centre.

Dr. Andelfinger believes that Quebec is doing well in terms of access to specialized care. “For over 30 years, this has been a separate mission of several teams in the province. Cardiologists from the four centres serve the entire territory of Quebec. It is the teams who travel more than the patients and specifically for the long-term phases,” he says.

Teams even travel to remote northern regions. “It’s really all of Quebec’s pediatric cardiologists who are participating in this effort,” emphasizes Dr. Andelfinger.

Sometimes, patients still have to travel to large urban centres to receive care, especially during the more acute phases of their condition. In these situations, organisations, including the En Cœur Foundation, offer support with housing.

—The Canadian Press’ health content is funded through a partnership with the Canadian Medical Association. Editorial choices are solely the responsibility of The Canadian Press.

–This report by La Presse Canadienne was translated by CityNews