Growing up with heart disease: the inspiring story of Félix and his mother Annick

This article is adapted from the fourth edition of the Foundation’s magazine

While disease drastically changes the lives of the people affected, it also has the power to transform and bring them together. Annick’s son Félix suffers from a congenital heart defect. Together, they’ve navigated hardships and challenges as well as successes and moments filled with hope. All with a sense of infinite love. They told us how the strength of human connections always triumphs.

Growing up with heart disease

Félix was born after an uneventful pregnancy. The perfect birth, according to his mother Annick. Félix was only a few minutes old when everything changed. There was a problem with his heart, and he had to be transferred urgently to Sainte-Justine Hospital to receive specialized care. Because his heart was the top priority, no one realized at that point that he also had Down Syndrome. At Sainte-Justine, Félix was quickly cared for by Dr. Joaquim Miró, a cardiologist who remained by the family’s side throughout Félix’s childhood.

“They told us that despite his heart disease, Félix would probably not undergo surgery until he turned five. At 13 months, he’d already suffered several pneumonias and had to have an operation. Then, everything went well until the age of 11. After he returned fromsummer camp one day, he  began coughing a lot. Then his lips and fingers turned blue. That was the start of a terrible ordeal. He was hospitalized and had wires coming out of everywhere. They put him on a BiPap to help him breathe, then used a catheter to go see what was going on with his mitral valve. He was in the intensive care unit for several weeks. We really thought we were going to lose him. He was hospitalized for two and a half months, but he got through it… There’s not much that can stop Félix,” said Annick.

After this life-shaking event, everything slowly went back to normal. Félix continued to be monitored by Dr. Miró at Sainte-Justine, and he became the confident, resilient and fulfilled young man he is today.

The synergy between the Montreal Heart Institute and Sainte-Justine Hospital

When Félix turned 18, Dr. Miró told Annick that there was good news and bad news. He asked which she wanted to hear first. “I told him to get to the bad news first! He informed us that because Félix was now 18, it was time to transfer his care and monitoring to the Institute. The mother in me was anxious… I wondered how this change, this big step into the adult world, would go. What was it going to be like at a different hospital with its own specific requirements? Dr. Miró then told me: ‘The good news is that I’ll still be in charge of Félix’s care at the Institute.’ We were very surprised and extremely relieved,” said Annick.

Thanks to the strong ties between these two hospital centres that work closely together to provide human-centric care, Félix’s transition to the Montreal Heart Institute  went smoothly. He would also continue to count on the physician he’d built a trusting relationship with over the years. “Félix was immediately seen as a person in his own right. He was welcomed at the Institute with lots of kindness and compassion,” added Annick.

Moving forward and continuing to dream

Félix is now 28 and his heart is beating stronger than ever. Despite his mitral regurgitation, another surgery is not in the cards for now. “He is monitored regularly, and resources are always available. It’s extremely reassuring to know that we can count on the Institute’s support because even if everything is going well, there’s always a lingering worry,” said Annick.

Due to her son’s neurological condition, Annick travels with Félix to his work and to all his medical appointments. She also makes sure he takes his medication. In other words, Annick’s dedication to her son defines her daily life. She describes the efforts Félix puts into developing his autonomy as a long-term endeavour, one for which they can count on loved ones as well as the Institute’s professionals.

Looking to the future with confidence

Félix has a long list of goals that he readily shared with us. “I’ve got so many dreams. I want to continue to enjoy sports like basketball and running, and I want to take up a racket sport. I’ve also had a girlfriend since 2013. My biggest dream is to wake up every morning next to her, to live with her.”

Félix and Annick’s testimonial in video (in French only)

Annick’s heart

If Annick’s heart could speak, here’s what it would say:

“I want to thank life because it wasn’t easy at the beginning. My son changed everything. The heart is all that matters. And the disease is what made me realize that.”

Félix’s heart

If Félix’s heart could speak, here’s what it would say:

“It’s important to continue to fight every day. My daily fight starts in the morning: I wake up to stay alive. And when I go to bed at night with the fear that my heart might stop beating, someone is there to remind me, ‘I’m by your side and here for you.’ ”