Like a big blow to the chest
“Mom, I feel like I’m going to die!”
Those are the words that woke Christine in the middle of the night on May 26, 2017. At the end of the line, more than 500 km away, her son Samuël was in a panic. He had just hung up the phone with the 911 operator.
“I tried to reassure him until the paramedics took over,” Christine recalls. “But I could never have imagined what would happen next.”
In the morning, Samuël called his mother again to give her an update. He was being kept in observation in the emergency room for a cardiac arrhythmia. The following night, with no apparent cause, he went into cardiac arrest.
“That’s when my heart nearly stopped too!”, says Christine. It was then that Dr. Jacqueline Joza entered their lives and that Samuël’s arrhythmia led to a series of discoveries.
A few years earlier, Samuël had left Abitibi to pursue his studies in Montreal. He had already lost consciousness a few times before, but he had never imagined that his condition could be so severe.
In fact, no one knew that Samuël had a specific gene that on occasion, causes his heartbeat to become irregular. On that terrible May night, his heart fluttered for more than 20 hours. Just a few hours after Samuël received the medication that was supposed to appease the flutter, his heart stopped.
This reaction prompted Dr. Joza and her team to conduct genetic tests on Samuël, as well as his whole family. The results came as a shock to everyone: Samuël’s sister, brother and father all carried the same gene. His mother was the only one who didn’t carry the disease, despite having an extremely low pulse.
“Samuël and our family’s story was taken very seriously at the Montreal General Hospital. Dr. Joza’s insistence on following every possible lead, to get to the source of the problem, probably saved the lives of my three children,” Christine explains.
In the following weeks, Samuël had to undergo surgery in order for the abnormal cells in his heart to be burned. For his sister Maude, who has a very slow pulse, the diagnosis was slightly different. Regular check-ups make it possible for the doctors to keep an eye on her condition without having to intervene in a more serious way.
It was Médérick, the youngest of the three, whose tests revealed the most serious condition. At just 18 years old, he was diagnosed with Brugada syndrome, a condition also known as sudden-death syndrome.
The condition can possibly explain why, a year earlier, he had lost consciousness and had begun to convulse. Epilepsy tests conducted at the time had indicated a negative result and with good reason: the problem was cardiac in nature.
Doctors quickly brought Médérick to an operating room to install a defibrillator-pacemaker that would protect him in case of severe, and potentially fatal, arrhythmia. A few months after it was installed, a control visit confirmed its usefulness: the device was working 3% of the time to regulate Médérick’s heartbeat.
While Christine acknowledges that the last year was difficult, she nevertheless sees it in a positive light.
“We’re trying to take it one step at a time. Let’s say that we’ve been through a whole range of emotions. The positive thing is that it has brought my children even closer together. I now call them my three precious hearts!”
For this particularly active family, the fact of having access to all the information and support necessary has been key: it has made it possible for all family members to return to a normal life and to go back to things like playing the sports they love. “We have excellent support from the cardiac electrophysiology team, even at a distance, which is really comforting for all of us,” adds Christine.
For Samuël and Médérick, the quality of the care they received during their stay at the hospital and follow-up visits made all the difference.
“Everyone on the team knew how to make us feel comfortable. We especially appreciated their humour, given the circumstances! They were always very professional, we could tell that they were experts in their field. That definitely helped us to get through this process.”
To learn more about cardiac electrophysiology and genetic analysis at the Montreal General Hospital, click here. To support research and patient care, we invite you to make a donation here.