Canadians with congenital heart disease living longer than ever: Report

A new report from the Heart and Stroke Foundation shows that Canadians with congenital heart disease are living longer than ever, but more needs to be done to ensure the care they require keeps pace.

According to the foundation, there are 257,000 people in Canada living with congenital heart disease (CHD) – meaning they were born with abnormalities in the structure of the heart, the most common type of birth defect in children – but the real number could be much higher, as not all cases are detected.

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“If we look at that latest available prevalence data and the current population, the number of children and adults in Canada living with CHD is likely over 300,000,” Dr. Andrew Mackie, a professor of pediatrics at the University of Alberta and cardiologist at Stollery Children’s Hospital in Edmonton, said in a foundation news release.

According to the foundation, improvements in complex heart repair surgeries and improved detection mean that nine in 10 babies born with a congenital heart defect are surviving into adulthood. But while advancements in treatment and diagnosis mean more Canadians are living with congenital heart disease than ever before, the foundation said gaps in treatment and support are found across the country.

“The number of cardiologists who work with adult CHD patients has not kept pace with the increase in the patient population,” the foundation said in a news release.

“There are also too few nurses, social workers and psychologists – despite the high mental health burden on people with CHD. Although there are 32 CHD centres across the country, staffed with multi-disciplinary teams that provide excellent specialized adult and pediatric services, they are not accessible to everyone who should have access.”

The foundation’s report noted that congenital heart disease more than doubles the risk of a stroke, and increases the risk of vascular cognitive impairment by 60 per cent. The condition also increases the risk of heart failure, atrial fibrillation and cardiac arrest, along with a host of other issues such as anxiety and depression.

Dr. Luc Mertens, medical director of the echocardiography service and co-director of the pulmonary hypertension program at SickKids in Toronto, said he has seen the CHD mortality rates plummet over the course of his career. When he began in the 1990s, the mortality rate was 10-15 per cent, but now it is below two per cent.

“We used to be focused almost entirely on helping babies with CHD survive and we have done that very well,” Mertens said in a statement. “But our next question is, how can we make them survive better – so that the disease impacts their life less?”

Doug Roth, CEO of the Heart and Stroke Foundation, said the organization is working hard to improve outcomes for those living with congenital heart disease.

“Working with partners we want to ensure everyone with CHD has timely and equitable access to specialized diagnostics and interventions, and life-long support to optimally manage their conditions,” Roth said.

The organization is currently funding research through annual grants, and working to develop a national strategy and action plan to help improve outcomes.