Paying it forward after heart failure and transplant

When Nathalie Lacoste-Hofmann’s husband, Ron, (R), discovered the Adult Congenital Heart Disease Program at UHN, he insisted they move to Toronto. (Photo: Courtesy Nathalie Lacoste-Hofmann)

Nathalie Lacoste-Hofmann has a history of beating the odds.

Born with a single ventricle heart defect, Nathalie was unlikely to survive infancy.

At nine months old, she underwent a Blalock-Taussig procedure, which helped to increase the blood flow to her lungs, though it was only moderately successful.

“The Blalock procedure never really took,” explains Nathalie. “We moved to Ontario when I was 10. That’s when I had my Fontan procedure at Sick Kids and it was very successful.

“I remember the day I was able to participate in track and field with everyone else. I was so excited to run the 100-metre dash.”

Toronto Adult Congenital Heart Disease Program at UHN is one of the first and largest of its kind

Today, children born with single ventricle defects receive staged reconstruction, a series of surgical treatments that reconfigure the heart and circulatory system. Thanks to advancements in surgery, the majority of these patients survive to adulthood – creating a patient population with specific and often complex needs.

The Toronto Adult Congenital Heart Disease (ACHD) Program at UHN’s Peter Munk Cardiac Centre is one of the first and largest of its kind in the world. It serves as a provincial and national resource for the rapidly growing ACHD population in Canada.

The program cares for more than 10,000 adult patients with congenital heart disease in collaboration with a multidisciplinary team devoted to easing disease burden and improving quality of life for this population.

“In my early 20s, I considered moving to Montreal, and I would have if not for my husband,” says Nathalie.

“He found out that the best ACHD program was at UHN, so he decided to do his PhD in Toronto, and that’s where we’ve been ever since.”

‘UHN made [my son] possible.’

At age 25, Nathalie started medication to combat the multiple arrhythmias she was experiencing. While the medication managed the irregular heartbeats, it took a toll on Nathalie.

“I knew I wanted to be a mom when I was 13,” she says. “With the arrhythmia meds, having a child through natural birth wasn’t possible. I was heartbroken.”

At 33, Nathalie had an ablation – a procedure that intentionally scars the inside of the heart to disrupt the electrical signals that cause irregular heartbeats.

The ablation gave her a small window of time without medication. Nathalie seized the opportunity and had her son, Ben.

‘UHN made Ben possible,” says Nathalie. “They were with me every step of the way. And honestly, I felt amazing during my pregnancy.”

A few years later, Nathalie and her husband, Ron, adopted their daughter, Anna.

Heart failure and transplant

When the arrhythmias reoccurred in 2013, Nathalie’s care team decided to redo the Fontan procedure. In 2021, Nathalie started experiencing symptoms of heart failure: swollen legs and extreme fatigue.

“I took a half-time leave from work,” she says. “I’m a teacher, and even though I was teaching online because of the pandemic, I was exhausted. I couldn’t even walk around the block.”

That summer, Nathalie began the workup for a heart transplant. She was admitted to hospital in September and would receive a new heart before Christmas.

“I was down in the chapel and when I came back upstairs everyone on the floor was like ‘Where have you been? They’re looking for you!’ It was surreal,” she recalls of the time the donor heart became available. “I was super calm. It wasn’t stressful. It was just meant to be.”

Paying it forward

Just over a year later, Nathalie is eager to give back.

“I still visit the nurses on 5B, they’re a second family to me,” she says. “Sometimes when I’m up there they tell me someone is waiting for a heart and it might be helpful if I talk to them.

“Peer-to-peer mentorship is so important for transplant. When you’re waiting it’s hard to reason things out. There’s so much fear. Hearing from someone who’s been through it really helps. Someone did it for me and now I’m just paying it forward.”

“I love teaching, but I’m ready for something different. I’m not sure what it looks like yet but I’m going to find a way to help the people who have helped me.”

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