congenital heart disease care in 2025: heart and stroke report highlights strides and struggles in canada
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aleasha, left, hopes that the advocacy work that she and nora do and telling their story to others will encourage more people to open up and talk about chd and help encourage people to enact the changes needed to address chd barriers.
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when nora was born in 2016, it was clear something was wrong.
“she was turning blue, and i could see her from across the room. they’re just doing weight measurements, and then, slowly, people just started to assemble around her,” said aleasha shorts, nora’s mother.
nora made it through her first moments, but the journey was just beginning.
after several weeks of confusion and waiting, the doctors finally diagnosed nora with congenital heart disease, a condition characterized by fetal developmental heart damage. doctors concluded that her heart was so severely damaged that she would need a transplant.
it took weeks to get an official diagnosis of chd, but five months after she was born, a donor was found and nora got a new heart.
surviving to thriving: improving care for people with a lifelong heart condition, a 2025 report from heart & stroke that includes nora’s story alongside her mother aleasha, highlights how far canada has come in the treatment for congenital heart disease (chd). as many as one in 100 babies born with chd, with as many as 300,000 canadian children and adults living with the condition today.
out of those, roughly 25 per cent will require critical medical intervention in the first year of their lives to address the damage because their hearts do not function adequately enough to sustain life, and the majority of cases are manageable with the right treatments.
with advancements in care, medication, and medical treatment technologies, roughly 90 per cent of people born with chd, such as nora, are now living longer and well into adulthood, showing that with improvements, change does happen.
progress made in chd detection and treatments
in the last few decades, significant progress has been made in the treatment of chd, with nine in every 10 babies born with the condition living into adulthood. this was not always the case.
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the improvements are led by earlier detection, allowing doctors to diagnose the condition and pursue the proper treatment faster than ever before. in some cases, chd can be detected prior to birth, giving medical teams time to prepare for treatment as soon as the baby is born or providing in-utero surgery. the progress in surgery has also made it easier, less invasive, and simpler to address chd in newborns.
as mentioned, the prevalence of chd is roughly one in every 100 babies, and the overall rates of chd in canada are rising. but that’s not because more children are being born with the condition—the mortality rate is plummeting drastically because of the advancements being made in this space, allowing for more of those born with chd to survive to adulthood.
access to care for chd remains a challenge
back in 2016, when nora was born, it wasn’t an easy road to get a diagnosis.
at first, they thought nora was having trouble transitioning from womb to world, and they took her to do a c-pap mask, stating that she would be fine. when that didn’t provide optimal results, they began doing other tests to see what was happening with nora because, at the time, they didn’t know where to start.
“it was just a lot of confusion because … we didn’t know what was going on,” said aleasha.
they also tried other avenues, such as an ecmo machine that helped her organs function to allow her to rest while they investigated, eventually landing on chd.
today, while these diagnostic tools are more advanced, many people living with chd continue to experience barriers to care. there are 32 chd centres across the country, but they are found in larger cities, leaving those who have a child with chd one option: pack up and move so that their child can receive the care they need.
nora and her family lived at the ronald mcdonald house while waiting to find a donor. aleasha notes that the ronald mcdonald house generously accommodated their family, giving them space to live and care for nora and their other newborn, koa. but that’s not a viable option for everyone living with the condition.
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people who have children with chd can also experience inequities in care due to socioeconomic status, such as living in poverty or dealing with housing instability, a lack of insurance, food insecurity, and transportation barriers.
this is especially difficult for those living in rural areas, who have to consider the significant costs it would take to make their way to places like the hospital for sick children (sickkids) in toronto. in some cases, these costs are not feasible and people cannot afford to take time off work or lose income.
other challenges include the lack of specialists in the country as well as difficulties transitioning from pediatric to adult care. since more people with chd are living into adulthood, the demand for specialized healthcare providers is much higher than the supply.
these can include chd nurses, cardiologists, social workers, and psychologists.
moving from one system to another can also be a significant challenge for new adults with chd because needs, health status, and understanding of their own condition vary.
“many young people do not have the basic self-management skills needed to successfully enter the adult healthcare system, such as knowing how to fill a prescription or make an appointment and knowing how to reach out to their heart team when they have questions or if they develop symptoms and need help,” said dr. andrew mackie, a professor of pediatrics at the university of alberta and cardiologist at stollery children’s hospital in edmonton, in the report.
roughly 25 per cent of young adults with chd will go through a grace period where their medical care becomes inconsistent or lapses for two years or more, leading to a worsened quality of life and poor overall health outcomes.
living with a chronic disease, such as chd, also increases the risk of people developing other conditions, including the risk of stroke, vascular cognitive impairment, heart failure, atrial fibrillation, and various mental health issues. the system, which is not as interconnected, can make it difficult for these families to seek care from multiple providers dedicated to treating each condition or complication separately.
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“the canadian healthcare system is often complicated. it works well when you have one problem or condition, but it becomes more complicated when you have multiple health issues,” said dr. luc mertens, medical director of the echocardiography service and co-director of the pulmonary hypertension program at sickkids, in the report.
solutions to improving care for chd
the report highlights solutions that, if implemented, can make it easier for those who still face challenges when accessing care for chd to get what they need to thrive. expanding specialized care centres is the first step so that more medical providers can be available to those who need them as the prevalence rates rise with higher survival rates.
travelling clinics and virtual care, or those that practice outreach to people not close to the large medical centres, are great ways to provide care to people living in rural or remote communities. by reducing the need for families to travel, cost and access barriers can be diminished.
building on research that already exists and learning more about how the disease affects people into adulthood now that more children are thriving well past their childhood years is another way to address the unique challenges people living with chd face. by increasing knowledge and understanding and looking into how the disease and the patient’s needs change over time, medical providers and those living with chd can be more equipped to handle the transition from pediatric to adult care.
patient navigators assist with transitions by helping adults with chd find the resources they need. however, less than 10 percent of chd patients have access to this service, highlighting the need for more patient navigators in the system.
for patients like nora, now eight, there is time for her before she transitions into adult care. while aleasha and her family are grateful for the support and medical care they received when nora was a newborn, they understand that not everyone born with chd will have that same level of care because of access and other barriers.
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that’s why aleasha and nora both believe in the power of advocacy and how telling the story of nora’s beginnings can help others.
aleasha hopes that the advocacy work that she and nora do and telling their story to others will encourage more people to open up and talk about chd and help encourage people to enact the changes needed to address chd barriers.
“i tell her, you’re not sick. you’re just special. you have a special reason to do the things you do, help other babies like you,” said aleasha.
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