Young family with a lot of heart takes on chronic disease

Not a single beat is taken for granted when your toddler has faced two open heart surgeries.

From the outside, Mason Godin is completely average toddler. He’s chubby cheeked and keen to run around sharing his toys – until his lips start to take on a blue hue and he has to slow down.

That happens because Mason was effectively born with half a heart – he has a rare and complex condition called hypoplastic left heart syndrome – and his body has to work twice as hard to keep up with the regular toddler antics.

“There’s no perfect solution or fix for this, it’s just day-by-day, taking things as they come. That’s the way it is with heart babies,” explains his mom, Erika Godin, who has been dealing with her son’s condition on her own since day one.

At the age of 20 months, he’s already undergone heart failure and two open heart surgeries. He’s been on feeding tubes, painkillers and blood thinners. There will be many more procedures to go through just to stay alive.

“He doesn’t know, of course. He doesn’t understand any of this,” said Godin.

Godin was studying to become a translator in South Korea when Mason’s arrival changed her plans.

She returned to Canada on emergency funds and care at CHEO has kept her in Ottawa – although she and Mason are often forced to travel for care in Toronto.

His condition also brings a range of potentially deadly complications and a vulnerability to things as normal as a common cold.

While she has family in Kingston, Ont., and Ottawa who help when they can, raising Mason on her own means Giron is alone facing the daily stress and fear – and the triumphs.

“Anything could happen anytime. A blood clot could be fatal,” she said. “You’re constantly worried. You’re never not worried. It gets better and you have good days and then night comes and you’re just thinking constantly – what will I do if this happens? You’re waiting, constantly, for the inevitable.”

“You never know when he could go into heart failure. I saw it happen and it was the worst time of my life, seeing my kid gray and lifeless,” she said.

“With a sick baby, you really do learn to appreciate things a lot more. He was behind developmentally a lot because of lying in a hospital bed for nine months of his life. When he does do something that shows he’s developing, I’m so happy. Every mom would be happy, but for me it means he’s beating this and fighting every day. He’s just amazing.”

Unsurprisingly, raising a child with a serious heart condition also comes with a big financial burden. The constant medical appointments and care makes it hard for Godin to work outside the home.

“We get funding but we’re maxed, it’s just never enough,” she said. “And we’re constantly being audited. While I understand it, it’s awful.”

While some help is available, many of the necessary items for “heart babies” aren’t covered by insurance. There’s also travel costs involved in getting the specific care for rare conditions.

Godin is turning to the community for help raising funds for Mason’s next procedure, planned for January.