NHL family’s fight with congenital heart disease

Like all first-time parents, NHL captain Nick Foligno and his wife Janelle from Sudbury, Ont., were ecstatic about the birth of their first child. After a healthy pregnancy with no warning signs, Janelle and Nick welcomed Milana on Oct. 14, 2013. Nick had just started his season with the Columbus Blue Jackets and was grateful to have a few days off for the birth of his beautiful baby girl.

When Milana hit all her initial newborn metrics, proud father Nick was looking forward to meeting his team in Detroit to play the Red Wings that weekend.

“When a player has a baby, he comes back to the locker room, and everyone gives him a big hug. It’s like a new addition to the team family – it’s a beautiful thing,” says Nick. “So, I was excited to go back and share the news with my team and have that experience for myself.”

But as soon as he landed in Detroit, Nick had a series of missed calls from Janelle. Milana had failed her pulse oximeter test more than once. The words “there’s something wrong with her heart” sent elated parents to unthinkable fear in a blink.  “I remember the team was so excited for me when I arrived, but they could see from the look on my face that I was obviously distressed. Eventually, my coach said, ‘Go, get out of here.’”

In the meantime, an echocardiogram confirmed that there was an issue with Milana’s heart. The rest unfolded at lightning speed: within one hour, Milana was transferred by ambulance to a children’s hospital. Nick frantically flew back to be there for his daughter. 

The diagnosis took some time to uncover. Milana had an under-developed, severely leaking mitral valve and needed surgery to replace it. But she was in a dangerous catch-22: she wasn’t big enough for the surgery, but she was too sick to grow at a good rate.

Congenital heart disease (CHD) happens when the chambers, walls or valves of your heart — or the blood vessels near the heart — don’t develop normally before birth.

Approximately one in 100 babies are born with CHD in Canada. It’s a permanent condition that requires a lifetime of checkups and treatment, and physical and mental health needs can change as the condition evolves overtime.

The family was craving support from their community. A friend of Nick’s sister happened to share the story of her own daughter’s heart condition, which prompted Nick’s sister to share Milana’s story. That conversation changed everything for the Foligno family. “Word of mouth saved my daughter’s life,” says Nick.

They learned about an experiential procedure on infants with CHD. Without hesitating, Janelle’s maternal instinct kicked in and she knew they had to advocate for it.  

“We took a big leap of faith,” says Janelle. “We were in a situation where we didn’t have any answers, and this was the only option we had.”  
In a surreal moment, Milana was declared case number 17 in the world for this procedure. “It’s just kind of crazy, because that's my number,” says Nick. Hockey fans know that 17 is the Foligno family number: Nick’s father and brother also wore 17 on their jerseys.

Milana’s initial valve replacement surgery was successful, though her journey included some bumps in the road. At age five, she developed endocarditis because the valve had become infected. She then was old enough to replace the infected valve with a pig valve, but that valve eventually started leaking. At eight years old, Milana received another valve that she still has today. “It's been a journey that’s still continuing,” says Janelle, “and she’s been so strong through it all.”

When Milana was hospitalized for her endocarditis scare, Janelle spent sleepless nights writing poetry for her daughter. 

This was a cathartic process for Janelle, plus she wanted Milana to have something to look back on that would make her feel empowered and hopeful about her story. 

At first, Janelle intended to have the poem illustrated as a keepsake, but once she saw the finished product, she realized other kids with CHD might appreciate it too.  So, she partnered with an illustrator to create a children’s book, “Dear heart: a letter to my special heart.” Janelle listed the book for sale, with the proceeds being directed to advancing CHD research. 

This led to Nick and Janelle forming The Hearts Playbook Foundation, which focuses on building stronger communities in heart health and funding heart research. 

“We feel it's very important to continue to support research, because that’s what helps families like us and other families affected by conditions like CHD,” says Nick.  

Thanks to ongoing research breakthroughs, more children with CHD are surviving into adulthood. Heart & Stroke researchers, and winners of the CHD Team Grants, Dr. Luc Mertens, Dr. Andrew Mackie and Dr. Thalia Field are making progress in early detection of CHD, better quality of life, and transitional care across the lifespan. 

Today, Milana is an active 11-year-old, filling her days with basketball, gymnastics, art and dreams of becoming a fashion designer. And like a true older sister, she loves spending time with her two younger brothers and playfully bossing them around. The family splits their time between Chicago during the hockey season and their hometown of Sudbury during the off-season, where they spend idyllic Canadian summers with extended family. 

“We've met so many families affected by CHD, and I love nothing more than when someone who’s 75 years old tells me their story of being born with a congenital heart defect,” says Nick.  

“Their journey has helped my daughter’s journey, because science continues to advance. It’s a continuous cycle of paying it forward.”