Sean J.

Sean J.

Sean might be a bit shy at first, but once he gets talking about his story, there’s no stopping him.

He was expected to be a healthy and full-term baby at birth but it wasn’t long until medical staff discovered Sean’s heart murmur. Having gone completely unnoticed during his mom’s pregnancy, it came as quite the shock for Sean and his parents.

“I had regular ultrasounds and nothing was ever said about his heart,” says Sean’s mom Candace. “It was very bizarre to find out he was born with a heart murmur. The doctors just said ‘it’s nothing to worry about, usually these things work themselves out but we’re going to check deeper just in case’.”

Thankfully, doctors were on the ball with new discoveries that popped up with Sean’s unexpected heart condition. It turned out that Sean had a corrected transposition of the great arteries, a septal defect and pulmonary stenosis, meaning his heart likely wouldn’t be working properly. Much to the doctor’s surprise, Sean’s heart was pumping normally, but he needed heart catheterizations from the time he was born until around age seven. At that point, it was time for heart surgery in Edmonton.

While Sean and his parents were learning details about his surgery, more unexpected news arrived. He was diagnosed with high functioning autism with ADHD. Fast-forward to Sean’s surgery date, his family found out he would need a pacemaker for every beat of his heart.

“That was a shock. We didn’t know that was even a possibility on the operating table until the day of the surgery,” says Candace.

With many challenges being thrown at him at once, Sean kept a positive attitude and underwent surgery where his septal defect and pulmonary stenosis were corrected. The doctors kept a close eye on his valve pressures and told the family that another surgery should be expected.

Nine years later, Sean still hasn’t needed another surgery. His doctor says that even if his valves start to leak, they can be controlled with medication. With this good news in their sights, Sean and his family now feel much more at ease. Although things seemed to be going well for Sean in the years following his surgery, in 2016 he suddenly passed out due to the slightest movement with his pacemaker.

“It was only two weeks after a pacemaker checkup. He just dropped on me,” explains Candace. “He was completely fine up until this point. He had never passed out before and was healthy despite all the things going on with his heart.

Sean was rushed to North Battleford where he was then taken by ambulance to Saskatoon. There, he was kept overnight and flown to Edmonton the next day because of concerns over his pacemaker. Candace was in for an intense couple days of travelling as she drove from Saskatoon to North Battleford to Edmonton and arrived just moments before Sean had his pacemaker changed. Travelling this much caused a lot of strain on the family, but being together during these stressful times was a top priority.

Today, Sean enjoys working at his first part-time job and loves spending time with his two siblings as well as his two dogs. While his journey has been filled with ups and downs, Sean and his family know that his hospital journey has shaped him into the person he is today.

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