Heart & Stroke Foundation says more people are surviving congenital heart disease

BY GEORGE SHEPPARD

“More people with congenital heart disease (CHD) are living longer thanks to improved diagnosis and care,” states a recent report released by Heart & Stroke Foundation. However, as this segment of the population ages and their health evolves, challenges persist to ensure the care they need over the course of their lifetime is sufficient.

Congenital heart disease refers to a heart condition someone is born with and lasts their entire life. The abnormalities in the structure of the heart that constitutes CHD can be identified before, or at birth, as well as detected later in life. These heart abnormalities are the most common birth defects in children; about one in 100 babies are affected by CHD. Dr. Andrew Mackie, professor of pediatrics at University of Alberta, cardiologist, and Heart & Stroke funded researcher, in referring to the latest data, stated “The number of children and adults in Canada living with CGD is likely over 300,000.”

“Our next question is, how can we make them survive better – so the disease impacts their lives less?”

Across the country, gaps in treatment and support for those suffering from CHD, and their families, persist. The total number of cardiologists working with adults who have CHD has not kept pace with the growing population. In addition, despite the high mental health stressors on those with CHD, there exists too few: nurses, social workers, and psychologists to properly treat them. Incidentally, women with CHD require support to make informed decisions if considering pregnancy, or if already pregnant.

The plight of people with CHD has improved significantly due to early detection, improvements in surgical procedures whereby the procedures are less invasive, thus recovery time is less arduous. To that end, Heart & Stroke affirms that nine in ten babies with a congenital heart defect now reach adulthood. Coinciding with this, the mortality rate associated with CHD has fallen, according to Dr. Luc Martens, Medical Director of the echocardiography service and co-director of the Pulmonary Hypertension Program at SickKids Hospital in Toronto, and a Heart & Stroke funded researcher. Dr. Martens emphasizes, “We used to be focused almost entirely on helping babies with CHD survive, and we have done that very well. Our next question is, how can we make them survive better – so the disease impacts their lives less?”

Doug Roth, CEO of Heart & Stroke, says the goal is to improve outcomes for people living with CHS and their families. Roth goes on to state, “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.”

A large part of that go-forward management strategy is the realization that having CHD puts people at higher risk for many other heart, brain, and cognitive issues. Neurodivergent challenges, depression and anxiety are common. A national strategy and action plan is being developed, led by Heart & Stroke with vital input from those living with CHD, their families, and medical people in the fields of treatment and care. This plan will target six priority areas: specialized care, evidence-based care, optimal transitions, integrated health systems, community integration, and whole person care.

The successes in the treatment of CHD have been many. The ability exists to enhance detection, provide remedies, and develop care that is aimed at lifelong wellness. Through effective research and collaborative efforts, hopefully progress is just at its infancy.