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congenital heart disease in canada: stats, resources and living with the condition

congenital heart disease (chd) is the most common congenital disability in the world. in canada, it affects roughly one in 100 children.

by robin roberts

feb 16 2024
read time 9 minute read
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children with congenital heart disease require regular monitoring, depending on the severity, by a pediatric cardiologist. getty images

about one in 100 canadian children are born with congenital heart disease, the most common congenital disability in the world, according to the canadian congenital heart alliance  (ccha). in fact, it’s more common than parkinson’s disease, multiple sclerosis, hiv/aids, cerebral palsy and cystic fibrosis. it’s also on the rise, while awareness is relatively low.

congenital heart disease (chd) is 60 times more prevalent than childhood cancer, according to the ccha, and about a quarter of children will require heart surgery or other interventions.
approximately 260,000 canadians are living with chd, two-thirds of them adults. at least half face the prospect of complications, multiple surgeries and premature or sudden death. many face a lifelong risk of health problems, such as difficulty with exercise, heart rhythm problems, heart failure, sudden cardiac arrest or stroke.
but medical advances in this field have improved so much that many of those born with chd will have few or no symptoms and a good quality of life if they avoid and manage any complications. in fact, 60 years ago, only about 20 per cent of children born with chd lived to adulthood. today, that’s risen to more than 90 per cent.

types and testing for chd in childhood and adulthood

chd is a condition you’re born with, “congenital” meaning present at birth. it occurs when the chambers, walls or valves of the heart, or the blood vessels near the heart, don’t develop normally before birth, according to the  heart & stroke foundation of canada.

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there are approximately 40 types of chd, ranging from minor, causing no problems, to major, requiring a range of treatments, including open-heart surgery and heart transplant.
the two main forms of chd include septal defects and obstruction of blood flow. in septal defects, otherwise known as a hole in the heart, the baby is born with an abnormal opening in the wall that separates the right and left chambers, causing blood to leak between the chambers and potentially enlarging the heart. in obstruction of blood flow, a narrowing in the heart valves, arteries or veins affects the flow of blood. 
chd is often diagnosed during pregnancy using ultrasound. after birth, if the baby shows symptoms, such as a blue tint to the skin, heart murmur, rapid heartbeat or breathing, poor feeding, poor weight gain, and prolonged crying, doctors will use tests such as: 
  • physical examination
  • pulse oximetry screening
  • cardiac catheterization
  • chest x-ray
  • echocardiogram
  • electrocardiogram
  • mri (magnetic resonance imaging)
  • cardiac ct

adults can discover they have chd when a defect that showed no symptoms early in life starts causing problems later on. it can also be the result of a complex defect that was repaired in childhood but requires further treatment in adulthood, according to the  university of ottawa heart institute .

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to diagnose chd in adults, according to the  mayo clinic , doctors will:

  • perform a physical exam
  • listen to your heart with a stethoscope
  • take your medical history 
they may also schedule tests such as: 
  • an electrocardiogram to measure how fast or slow your heart beats (often paired with a stress test while walking on a treadmill)
  • an echocardiogram to show blood flow through the heart and heart valves
  • a chest x-ray to show changes in the size and shape of the heart and lungs
  • a pulse oximetry to estimate how much oxygen is in the blood
  • an mri
  • cardiac catheterization to check blood flow and blood pressure in the heart
“if the mother or the father has known chd, their fetus should get a focused heart ultrasound in utero, a fetal echocardiogram,” says dr. jasmine grewal, head, division of cardiology at ubc’s faculty of medicine, clinical professor of medicine and director of the cardiac obstetrics program and the virani provincial adult congenital heart program, as well as president of the canadian adult congenital heart network.
“that aside, any woman who is pregnant would get a 20-week comprehensive anatomy scan, which looks at the heart in a reasonable amount of detail, so it should detect any significant congenital heart disease.”

what it’s like living with chd

more than half of all babies born with chd will need surgery, according to the children’s heart network . about 21 per cent of children requiring cardiac surgery are under a month old, and 40 per cent are under a year old.

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because those living with chd are susceptible to future heart issues, they will need lifelong specialized care, usually at one of the 15 adult chd clinics  across the country.

patients ‘ immune systems are also not as effective at fighting infections, so keeping up to date with flu and pneumonia vaccines is often a good idea. a simple respiratory tract infection could also become life-threatening.

most women with chd have an issue-free pregnancy , but others with a more severe defect who become pregnant face their own set of risks, some serious enough to avoid getting pregnant altogether. the heart & stroke foundation  recommends  women planning to become pregnant ensure they’re as fit as possible before and during pregnancy by, for example, walking or swimming, but advises those with complex heart conditions to talk with their cardiologist before starting any exercise program.

the foundation also recommends getting extra rest and avoiding overheating, including from saunas and hot tubs.

children will require regular monitoring, depending on the severity of their chd, by a pediatric cardiologist. once they reach 18, they will transition to an adult cardiologist specializing in chd. many of those adolescents and young adults, however, are lost to follow-up, according to a report in the canadian journal of cardiology .

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transitioning from pediatric cardiology to adult: highlighting gaps in care

according to the heart & stroke foundation , as many as one in four children with chd stop going to their clinic after age six. more than half stop going after they turn 18. less than a quarter of adults with chd are seeing a specialist.

“in canada, pediatric cardiologists typically follow patients until they’re about 17 years of age and then transfer their care to an adult chd cardiologist at about age 18,” says dr. andrew mackie, pediatric cardiologist at edmonton’s stollery children’s hospital, who also researches transition. “unfortunately, gaps in care, including not being seen for three or more years or completely dropping out of cardiology care, occur in about a quarter of patients. and it’s most common in this age range of 18 to 21.”
mackie says some of the reasons for these gaps in care include young adults believing they’re cured because they no longer have symptoms or not being able to access adult care because of where they live. others have priorities that take precedence over their condition, such as attending college or starting a new job and are unable to take the time off required for medical appointments.

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“but there are serious consequences that can arise from not continuing care,” says mackie. “they can have late detection of new problems. and because new problems can evolve without symptoms, the patient isn’t aware that problems are developing. and then when they eventually seek care, it can be more challenging to treat the complication because it’s evolved further and is a more severe case.”

grewal says her province has a well-established transition program. “ the b.c. children’s hospital has an outreach program where pediatric cardiology is supported to go out into the community and provide care. as a result, many of these patients are looked after in their local community, which is much more patient-friendly. unfortunately, we are not supported to do this in adult congenital cardiology. so, all of a sudden, [patients] turn 18, and not only do they have to contend with becoming an adult, but now we’re asking them to come to st. paul’s hospital in downtown vancouver for their care. even if we, despite our best efforts, have a transition process, it may not be easy for them to do that.”

even if these young adults have every intention of maintaining their own care, they may come up against long wait times to see a specially trained cardiologist since there just aren’t enough of them.

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“we need more providers in the adult chd specialty, for sure,” says mackie. “and we need to be able to serve our patients better who have difficulty making it to appointments. for example, there isn’t the workforce right now in canada to have outreach clinics. on the pediatric cardiology side, many programs like mine do have outreach clinics, where we go to a hospital in fort mcmurray, grand prairie and yellowknife for a couple of days and see patients. this makes it easier for patients who live far away. but in the adult chd world, they don’t have the human resources to do that yet.”

dr. patrice lindsay, director of health systems change at the heart & stroke foundation of canada, says,  “we have some of the top experts in the world, and we have been training more people. and the health professionals in that field have been doing a lot to grow the interest in the area.

“ our services are growing, but they’re not growing fast enough to meet the needs of the number of people who are surviving and needing those services. over the last two years, heart & stroke has been working with congenital heart researchers and clinicians, and we’ve launched a congenital heart disease strategy for canada. one of the pieces of that is to address access to specialized services.”

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a dearth of resources for chd

 
because there are fewer resources allocated for the care of adult chd patients than other cardiac patients, there are often long wait times for clinic visits and surgeries, leading to increased anxiety and even death. there are also too few adult chd-trained cardiologists in canada to care for the growing population, primarily because it requires two extra years of training on top of the six needed to become a general cardiologist. it’s also labour-intensive — patients with complex heart issues require a lot of time and attention — and it doesn’t pay as well as other areas of cardiology.
and, because half of chd patients grapple with mental health issues, such as anxiety, depression, isolation and financial hardship, more funding is required for social workers and psychologists to treat them.
“we know that anxiety and depression and other mental health challenges are more common among survivors with chd compared to the general population,” says mackie. “including psychologists as part of the broader chd team is important. and, for patients who live farther away, [it’s important to] set them up with mental health providers closer to home.”
“there’s variation from one academic medical centre to the next, but in general, the adult chd centres have fewer human resources than we do on the pediatric side. so, they’re less likely to have access to a social worker or psychologist, for example,” says mackie. 

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grewal says a finite amount of available funding often just covers clerical and nursing support, and oftentimes, none for psychology. “we need to create a system which allows psychologists to practice in the hospital where they get the same, or close to the same, amount of remuneration as in private practice so we can attract them.
“then there are other programs, like ours, that do have funding, and we can’t attract a full-time psychologist because the work is challenging and the remuneration is less than it would be in private practice.”
grewal hopes that as the specialty grows and becomes more established, it will attract more people who want to practice in this field.

research and resources for chd patients

lindsay says there’s an ongoing range of research into chd, particularly around the cause. “we still don’t fully understand why, in a family of six, one child has it and not the others,” she says. “there’s also research into drugs and procedures, mostly around surgical techniques and non-invasive techniques.”
meanwhile, patients who take an active interest in their health by making and keeping cardiology appointments, educating themselves on their condition by asking questions of their health care team, and implementing a healthy lifestyle program can have a good quality life while living with a chd.

the peter munk cardiac centre  has a wealth of resources on its site, including food and fitness tips, as well as advice for reducing stress. there are also many resources on the  heart & stroke foundation’s  site, including:

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robin roberts
robin roberts
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