They are also at greater risk for other heart, brain and cognitive issues
TORONTO, Feb. 4, 2025 According to a new report released today by Heart & Stroke, more people are living with congenital heart disease (CHD) thanks to improved diagnosis and care. However, as this population grows and their health evolves, not enough is being done to ensure the care they require over their lifetime keeps pace. Adding to the need for continued support is the fact that people with CHD are at higher risk for other heart and brain conditions.
CHD means a heart condition someone is born with and lives with their entire life. It refers to abnormalities in the structure of the heart – sometimes referred to as congenital heart defects. These abnormalities can be identified before or at birth, or later in life, and they can vary in severity – some can be devastating. Heart abnormalities are the most common kind of birth defects in children – about one in 100 babies is affected by CHD.
According to the latest available published data, 257,000 people in Canada were living with CHD but experts agree that the current number is considerably higher. "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," says Dr. Andrew Mackie, a professor of pediatrics at the University of Alberta and cardiologist at Stollery Children's Hospital in Edmonton and a Heart & Stroke funded researcher.
Challenges across the system
Gaps in treatment and support for people living with CHD and their families persist across the country. The number of cardiologists who work with adult CHD patients has not kept pace with the increase in the patient population. 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 transition from pediatric to adult care can be bumpy, and for one-quarter of young adults the result is a disruption to their care. Young people can experience anxiety around leaving a familiar setting and health team and taking on more of their own health management. Transitions can also be challenging for parents and caregivers as they can become less involved in their children's care, causing anxiety and stress.
Women with CHD are faced with several considerations if contemplating pregnancy or already pregnant, including safety and risk, and changes to medications. They should be supported to make informed decisions and provided appropriate care. "Ultimately each woman will make the decision that is right for her, and the risk assessment or risk tolerance is different for everyone; it is important to remember that mom's health is linked to the baby's health," says Dr. Jasmine Grewal, director of the Cardiac Obstetrics Program and the Yasmin and Amir Virani Provincial Adult Congenital Heart Program in Vancouver, and an expert in CHD and pregnancy.
From surviving to thriving
Better and earlier detection, and surgical improvements such as more complex heart repairs as well as less invasive procedures, have greatly improved outcomes for people with CHD. In fact, nine in 10 babies born with a congenital heart defect now survive to adulthood.
Dr. Luc Mertens, medical director of the echocardiography service and co-director of the pulmonary hypertension program at SickKids in Toronto and a Heart & Stroke funded researcher, has seen the mortality rate associated with CHD procedures plummet. "When I started my career in the 1990s the overall mortality rate was about 10 – 15%, and now at my hospital it is below 2%. We used to be focused almost entirely on helping babies with CHD survive and we have done that very well. But our next question is, how can we make them survive better – so that the disease impacts their life less?"
When Aleasha Shorts gave birth to twins in 2016, one of her babies – Nora – turned blue just minutes later. At first, staff at the hospital in Hamilton didn't know what was wrong, but then realized it was her heart. Nora was diagnosed with CHD and Aleasha and her husband Shane were told: "She needs a heart transplant to survive." Five months after she was born, Nora received her new heart. Nora and her brother Koa are now active, thrill-seeking eight-year-olds. Nora takes gymnastics and acro dance classes, and at the same time, bloodwork, biopsies, and psychological and medication checks are also part of her routine. "We worry so much, but we never want to forget to let them live. Nora has to learn her own limits," Aleasha says, "I want her to be proud of herself."
Connections with other conditions
Having CHD puts people at higher risk for a host of other heart, brain and cognitive issues. Neurodevelopmental challenges, depression and anxiety are common. Individuals with CHD have a higher prevalence of a wide range of other conditions, and they occur at an earlier age. Some connections between CHD and other conditions are particularly strong:
- CHD more than doubles the risk of stroke.
- There is a 60% increased risk of vascular cognitive impairment associated with CHD.
- The risk of heart failure is substantially higher in those with CHD – between nine to 13 times the risk, and heart failure is the leading cause of death among adults with CHD.
- People with CHD have approximately 10 – 20 times the risk of developing atrial fibrillation.
- Individuals with CHD, particularly those with more severe types, are at elevated risk of cardiac arrest.
Taking action to improve outcomes
"Heart & Stroke is committed to improving outcomes for people living with CHD and their families," says Doug Roth, CEO, Heart & Stroke. "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."
Heart & Stroke is funding life-saving research including annual core grants focused on CHD as well as three Congenital Heart Disease Team Grants in partnership with Brain Canada and the Canadian Institutes of Health Research (CIHR) Institute of Circulatory and Respiratory Health and Institute of Genetics.
A national strategy and action plan is being developed, led by Heart & Stroke with input from people living with CHD and their families and medical and other experts across the country, focussed on six priority areas:
- Specialized care
- Evidence-based care
- Optimal transitions
- Integrated health systems
- Community integration
- Whole person care.
For more information:
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SOURCE Heart and Stroke Foundation
Contact Information: Stephanie Lawrence, [email protected], 613 290 4236
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