By the time Elle Pendrick was eight, she had undergone three open-heart surgeries – one at three days old, one at six years and another at eight.
In between the countless hospital visits that shaped her childhood, she also missed out on something most kids take for granted: sport.
Pendrick, now 43, was born with complex congenital heart disease, one of a group of conditions affecting the heart’s structure. It’s the most common birth condition in Australia, affecting around one in 100 live-born babies.
For a long time, children like Pendrick grew up believing physical activity was not just bad, but dangerous.
“I remember often sitting on the sidelines watching the kids play sport, hanging out with the teachers or going to an arts and crafts session instead,” says Pendrick.
Still, growing up in country NSW where sport was common, her parents signed her up for weekend extracurriculars like hockey and athletics. But because she believed her condition to be incompatible with exercise, Pendrick never enjoyed it, and her confidence took a hit.
“I hated it. I was freezing. I was miserable … and it also instilled this theory that I’m not good athletically … I always came last,” she says.
Then the perception that exercise is damaging for people with congenital heart disease began to radically change in the 1990s. Maybe, some researchers started to think, it could even help.
Among them was Professor Andrew Coats, a cardiologist and now CEO of the Heart Research Institute.
In the late 1980s while working at Oxford University, Coats had found success using exercise to treat high blood pressure. When he transferred this method to patients with heart failure, it improved outcomes.
“Many people with congenital heart disease end up with a heart failure-like problem, so quite a few years later, people in the CHD area started wondering if their patients could also benefit,” he explains, while pointing out the condition is far more complex than other heart problems, and it’s taken time to accumulate data.
Today, exercise-based cardiac rehabilitation for congenital heart disease is the recommended standard of care globally, and part of the reason why many adults, like Pendrick, are among the first generation to outlive the disease.
Dr Rachael Cordina, a cardiologist at Sydney’s Royal Prince Alfred Hospital (RPA), says advancements in care for those born with heart disease over the past few decades, like physical therapy, have revolutionised survival rates – although she points out exercise-based cardiac rehabilitation is “still not deeply embedded in our clinical care pathways”, and is resource-intensive for most patients.
She says exercise has been particularly beneficial for those born with a single functional heart ventricle and have undergone what’s called the Fontan circulation [Pendrick has a different kind of heart disease].
“No other medication has ever come close in terms of improving the performance of the cardiovascular system in those patients. Exercise is the best medicine.”
Dr Derek Tran, principal exercise physiologist at RPA’s Department of Cardiology, says one of the main benefits of exercise in the setting of congenital heart disease is that it “can increase muscle mass, which allows access to structural support for blood vessels to improve circulation,” he says.
Tran, who is about to conclude the world’s largest clinical exercise trial for those living with congenital heart disease, says his and Cordina’s research has shown patients “who are fitter and readily participate in exercise often have better long-term outcomes, and it can potentially shift their disease trajectory.”
This research is helping inform personalised guidance for patients around exercise, which they’re starting to implement in specialised care pathways and using to develop a lifestyle and exercise clinic.
After her fifth and most recent open-heart surgery at 33, Pendrick began to experience these benefits first-hand.
“Within days, I was out of bed and doing laps of the ward, and once I went home I joined cardiac rehabilitation at Canberra Hospital, which changed everything,” she says.
In the decade since, exercise has become an important part of Pendrick’s life. She’s competed in three City2Surfs (walking), and enjoys Pilates as well as riding her electric bike with her husband.
But integrating exercise into her life has been a learning curve as she discovers what her limits are, and about adapting movement to her condition.
As Cordina points out, most exercise advice for those with heart disease is designed for patients, often older, who develop it through lifestyle factors.
“We often hear that patients have gone to see a personal trainer, and they find it quite upsetting because the trainer is pushing them and has unrealistic expectations of what that person’s going to be able to do with their cardiovascular challenges,” she says.
Living with medical trauma (Pendrick has had over 20 surgeries, including 5 open-heart surgeries) can also make exercise challenging.
“I didn’t realise until I started seeing a trauma therapist that my nervous system couldn’t necessarily tell the difference between when my body was under exercise stress and medical stress,” she explains.
“I might experience nightmares and flashbacks and not sleep well – I’d find it distressing for a few days until the muscles had healed themselves.”
The benefits of exercise go beyond the physical as well, given children with congenital heart disease are at greater risk of mental health problems, including anxiety, depression and PTSD.
“They’ve often had years of being told by caring friends and relatives that, ‘oh, you’ve got a weak heart, you shouldn’t exercise’. But obviously in younger people, they’ve also got the enthusiasm, they want to be lively,” says Coates.
“Now, exercise can free them up, and they can do more, and that is a huge social enabler because there’s often group exercise, they can participate in sports.”
While living with a complex, chronic illness can be tough, Pendrick says finding a community of others like her has been invaluable.
“The community is incredibly important. You can learn, benchmark yourself and ask all the dumb questions that you can’t ask your friends. It’s fantastic.”
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