My daughter lives with the most common heart condition in Canada. Here's how it impacts our lives

When Aleasha Shorts delivered fraternal twins in 2016, she was oblivious to the hurdles she would face. The babies were born in Hamilton, Ont., and her son weighed “exactly two kilograms” (4.4 pounds).

“He was the least of our worries,” Shorts told Yahoo Canada. The other twin, her daughter Nora, suffered a heart attack at birth and was soon diagnosed with congenital heart disease (CHD), a lifelong genetic condition that impacts more than 300,000 Canadians.

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“We didn't know that there were any heart issues. It was a high risk pregnancy, so I had a lot of scans and monitored really closely, and there was nothing abnormal…,” Shorts said. “I didn’t hold Nora for 11 days after she was born.”

The next few months were a blur. Nora was transferred to Sick Kids in Toronto and Shorts spent almost a fortnight nearby at the Ronald McDonald House. Five months later, Nora received a heart transplant.

CHD affects an estimated one in every 100 Canadian children, and according to the Children’s Health Network, is the most common birth defect. The disease can affect how the heart works, how it’s structured or both. There are 35 kinds of known CHD defects, many of which occur in combination with one another.

A new report released this week by the Heart and Stroke Foundation of Canada states that as many as one in four CHD cases are critical and require medical intervention within the first year of life. Nine in 10 babies born with a congenital heart defect now survive. Although new advancements by doctors and researchers are to thank for this lengthened life expectancy, the report also states that CHD more than doubles the risk of stroke and substantially increases the risk of heart failure. In addition, CHD increases the possibility that brain and cognitive issues — including depression and anxiety — could develop later in life.

For the most part, Nora lives a normal life. For Shorts, the now 7-year-old twins's gymnastic classes — which she's dropping them off for when she speaks to me — feel like proof-positive of the recent advancements in CHD. But the worry of having a child with a congenital heart defect never leaves.

Nora receives regular check-ups and specialist appointments and requires daily medication. But as Nora grows, Shorts becomes increasingly worried about the possibility of another transplant; she explained that doctors told her they were unsure what would happen once Nora turns 10.

“I'm getting more anxious and more worried, because we're getting close to the 10 years," Shorts said. "She's gonna hit eight years in April...It makes me want to throw up sometimes when I think about it...She's doing fantastic, but the meds...they get to her."

Vincent Loiselle vividly remembers the day his life changed 14 years ago. The biking enthusiast had been training indoors all winter in preparation for summer races when his heart “blew up.” He was diagnosed with CHD following a massive heart attack.

“I defined my life as being an athlete — and in one instant, it turned into ‘that's not what it's going to be’,” the now 48-year-old told Yahoo Canada, adding that the diagnosis impacted his mental health. “The emotions that come with heart illness, that's the tougher angle, I believe. My wife and my son — at the time, he was five months old — they kept me alive…”

In the years since his diagnosis, Loiselle has come to accept his diagnosis and is helping raise awareness for CHD and help others living with heart defects.

“I use my story to speak up and talk to people, because I feel like some people are feeling the same things as I was feeling back then…,” he said. “In the storm, although you can't see the sun, the sun is still there. The storm will pass.”

The good news for people like Loiselle is that advancements in research and surgery techniques mean that the life expectancy for people with CHD has improved.

“I've had five operations now, and what the specialists are telling me is that the equipment is getting more precise,” he said. “They can see more clearly. They can act in more deliberate procedures, so the expectancy for survival is going up. So in that sense, it's very encouraging.”

But Loiselle cannot escape the imprint of CHD on his daily life. He says he hasn’t even drank decaf coffee since 2017 and makes sure his extremities don’t experience fluctuations in temperature, since he has poor blood flow.

“I didn't know what being tired was before. Now, I think I could always take a nap. I'm always tired,” he said. Stairs are a particular challenge that leave his legs “on fire” from exertion.

According to the Heart & Stroke Society, many Canadians with CHD lack access to specialized care. While Shorts says that she feels "privileged" to live in close proximity to the hospitals her daughter frequents Loiselle has to commute more than an hour to Montréal as his local hospital can’t provide the specialist care he needs.

For both Shorts and Loiselle, thinking of the future with CHD comes with its challenges. Shorts says she often thinks of the future about what life will be like for Nora, who often talks about wanting to "be a mommy" when she grows up. The reality of carrying a child would require her to go off medication, which Shorts calls "terrifying."

"Obviously there are other avenues...she could change her mind. But right now, when she says it, it get me," Shorts said. "I just try to think: She's here. That's all I've got. She's here."

For Loiselle, a semblance of zen has been hard-wrought. "I'm not going to wait to die. I'm going to live without regrets and I'm going to enjoy everything that comes," he said. "I want to be a part of life, enjoy it as much as I can, while I can.”

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