Despite decades of progress in congenital heart disease care, more work is needed

A new report shows a lot of progress has been made in congenital heart disease care, but also that there are still large gaps.

In the 50 years since he underwent life-saving heart surgery, Calgarian John Wheatcroft has witnessed significant advancements in the treatment of congenital heart disease.

Wheatcroft, now 78, was diagnosed with a patent foramen ovale (PFO) at the age of 29 after experiencing severe illness and an erratic heartbeat.

The congenital heart defect, which left a hole in his heart from birth, had gone undetected despite his participating in hockey and baseball as a youth.

“I was working on the rigs, doing all the dirty work—hard work—and my heart just wasn’t keeping up. I didn’t know what was wrong, but I knew something was,” he said.

“I knew I was tiring out and was right off my feet.”

Doctors discovered the hole in his heart, which had enlarged and was causing serious complications.

He underwent surgery in 1976 to close the hole, which was the size of a silver dollar.

Wheatcroft nearly did not survive the surgery, which required him to be resuscitated multiple times.

“I honestly remember the cardiologist saying, ‘Have you ever seen a hole in a man’s heart that big that was alive before?’” he said.

That same year, Wheatcroft’s four-year-old son Duane, who was born with the same condition, also had surgery.

Wheatcroft said he managed to keep it together through his own diagnosis and treatment, but having his son face similar challenges was more troubling.

“It was completely different. I was worried about him all the time,” he said.

“I can take care of me, but he doesn’t know what’s happened yet.”

Both Wheatcroft and his son recovered, but damage from the procedure eventually led to Wheatcroft requiring a pacemaker.

He said it took years to fully heal.

“They had to use a lining from around the heart, so they took a piece out of that to fix it,” he said.

“After, I had an ache around my heart all the time. I asked, ‘What’s that?’ and the doctor said, ‘Oh, that’ll go away in about five years.’ And it did.”

A new report from the Heart and Stroke Foundation of Canada highlights the progress made in congenital heart disease care over the past several decades.

According to the report, about 90 per cent of babies born with congenital heart disease now survive into adulthood—a dramatic improvement from previous generations.

Advances in imaging technology allow for earlier detection—sometimes even before birth—and new surgical techniques have significantly improved outcomes.

“This has been one of the greatest stories for science,” said Dr. Payam Dehghani, a Regina-based cardiologist specializing in adult congenital heart disease.

“We’ve had innovations in cardiac surgery. We’ve had innovations in expertise in taking care of babies who are now older, and we’ve also understood that many of the obstacles we’ve had in caring for these patients are psychosocial ones.”

Despite these advancements, the report identifies several challenges.

There is a growing shortage of congenital heart disease specialists in Canada, limiting access to necessary care.

Many patients also struggle with the transition from pediatric to adult medical services, which can disrupt continuity of treatment.

The report highlights that congenital heart disease is a lifelong condition, requiring ongoing medical attention to monitor for complications such as stroke, heart failure and arrhythmias (irregular heartbeats).

“The pace with which adults with congenital heart disease has grown has outpaced the training and the production of cardiologists with expertise in this field,” Dehghani said.

Samantha Semper, director of health policy and systems at the Heart and Stroke Foundation, said the increasing number of congenital heart disease survivors has created a new demand for specialized care.

“We have more adults now in the Canadian population than ever before living with the impacts of congenital heart disease,” she said.

“We know one of the things in particular that can be really challenging is the transition period of going from pediatric specialized care into adult specialized care.”

Semper said the burden is particularly heavy on those outside major centres.

“There are only 32 clinics across the country, and they’re fantastic, but they’re in urban centres,” she said.

“That often means that people are travelling. … It can be expensive, it can be disruptive to their daily routines, to their work lives.”

Mental health is another concern, with congenital heart disease patients facing higher risks of anxiety and depression, yet support services remain inadequate.

The report calls for a national strategy to ensure patients have access to specialized and integrated care, improved transition programs and better mental-health resources.

Wheatcroft said he experienced periods of exhaustion and sadness, though he tried not to let it consume him.

“There were times where I just would like to have been alone and just sit in a field for a while and just not do anything,” he said.

“You try to keep your mental stability the best you can.”

Semper said Heart and Stroke is working to ensure a more holistic approach to congenital heart disease care.

“We know these adults and people living with congenital heart disease are at increased risk for AFib (atrial fibrillation) and stroke, but we also know there’s higher incidence of depression and anxiety,” she said.

“Heart and Stroke is very committed to looking at this and forming an action plan.”

She said families also need support.

“Congenital heart disease is something that’s going to affect the entire family unit,” she said.

“There can be travel to clinics, there can be disruption to work routines, and everybody in the family is going to feel those things.”

Heart and Stroke has funded more than $1.6 billion in research since its inception.

“That’s a huge reason why we’re seeing essentially nine in 10 babies born with congenital heart disease now survive into adulthood,” Semper said.

“Advancements in research, also advancements in treatment, in surgery, in detection, in rehab—all those pieces play into these incredible gains that we’ve seen in survival rates and reduced mortality.”

For those recently diagnosed, Wheatcroft said there is hope.

“It’s not as bad as you think,” he said.

“It’s so much better now. Life is good.”