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LOUIS: A special place in my heart

Not only is Feb. 14 Valentine’s Day, it also happens to be Congenital Heart Disease Awareness Day.

Not only is Feb. 14 Valentine’s Day, it also happens to be Congenital Heart Disease Awareness Day.

For those of you who don’t know, my son Zack, born four weeks early and now about 10-and-a-half months old, was born with a congenital heart condition called Tetrology of Fallot (TOF). My wife Laura and I first heard about this before Zack was even born; even that early, it can be difficult to know what to expect.

TOF is a complicated condition that usually involves four congenital heart defects. Zack’s case falls on the mild to moderate end of the spectrum. To make a complex story short, his heart was structured in such a way that not enough oxygen could get to his body, which would affect his long-term health significantly if left untreated.

Before corrective open-heart surgery, Zack was subject to blue or “tet” spells, which involves him feeling discomfort in his chest because of his heart, which causes him to cry, which causes the heart to work more, which causes him to cry more, and on it went in a negative feedback loop. This caused his oxygen levels to go down and his skin to turn blueish. The tet spells, thankfully, would usually subside with plenty of love from Mom and Dad – until one day when it didn’t.

We were all at Ronald McDonald House in Vancouver a few days before surgery when Zack’s blue spell got particularly severe. We quite literally had to run to the emergency room to make sure he would be okay. The doctors worked quickly to get Zack back to breathing normally, and ultimately it quite literally was his mom’s love that calmed him down and got him back on track.

That night was easily one of the worst nights of my life and I pray he never has to go through something like that again.

On Sept. 8, 2022, 6-month-old Zack was brought in for open-heart surgery. This was something Laura and I saw coming months prior, but it was still nerve-racking waiting for our little guy to come out of the operating room.

The surgery was a success, but complications with fluid going into his lungs kept us away from home a little while longer. I can’t say enough about the compassionate staff at RMH and at B.C. Children’s, but I would just as soon rather not see them again in that capacity. The whole time we were away form home, back and forth between RMH and the hospital, was a harrowing, draining experience in every sense of the word. Yet it was worth it to make sure Zack was as healthy as he could be.

Most evenings, Zack sits next to either my wife or myself, figuring out his toys, babbling to us and occasionally bouncing to his favourite music (inexplicably, one of his favourites is the “Hawaii 5-0” theme). To look at him, aside from a scar on his chest, you wouldn’t know he was any different from any other kid. It turns out Zack is made of some pretty stern stuff; he’s a tough kid who’s been through a lot in his short time on this earth.

The Canadian Congenital Heart Alliance says 250,000 Canadians live with some form of congenital heart disease. If you are so moved to do so, I’d encourage you to find a way to support those who work for the betterment of children’s health. This could be in the form of a donation to B.C. Children’s or Variety Children’s Charity, for example, or it could be as simple as sharing what children’s health care workers are doing to make the world better for our little ones.

About the Author: Adam Louis

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