This NHL veteran and his family are now national ambassadors for the Heart and Stroke Foundation
NHL player Nick Foligno and his wife, Janelle, have a daughter born with a congenital heart disease.
Eleven years ago, Nick and Janelle Foligno experienced what is many parents' worst fear.
Their daughter, Milana, was born with a congenital heart disease, and would need an experimental surgery to save her life.
"I'll never get that ride out of my head. You know, following an ambulance with your daughter in it and you and your wife are in the front seat with an empty car seat in the back going to the children's hospital in Columbus," said Foligno, a forward in the National Hockey League (NHL) who played for the Columbus Blue Jackets at the time. Today, he is the captain of the Chicago Blackhawks.
Milana was later transferred to the Boston Children's Hospital where – at three weeks old – she became the youngest person in the world to receive an experimental procedure in which surgeons replaced her heart's mitral valve.
"The mitral valve is the valve that takes the blood from the lungs to the heart," said Foligno.
"And so essentially, it was regurgitating back into her lungs and causing her to have a really hard time breathing and essentially suffocating."
The surgery was a success, and it saved her life.
Milana has had some complications along the way, including requiring another valve replacement when she was five.
"She came down with endocarditis at five years old, which is always a risk when you have a foreign substance in your body where it could get infected, and any bacteria in your blood wants to attach itself to the foreign object," said her mother, Janelle.
And when she was eight, doctors expanded Milana's valve, through a catheter, to accommodate her growing heart.
Her father says those experiences have given her a unique outlook.
"She's got a really cool perspective on people," Nick said.
"I find she learned to study people, probably from having to trust so many… And she's a great older sister to her brothers, when they're not annoying her."
Now Nick and Janelle – who both grew up in Sudbury – are national ambassadors for the Heart and Stroke Foundation's February Heart Month campaign.
"Now we're able to help and, and bring awareness to an area of congenital heart defects that maybe wasn't known before," said the 18-year NHL veteran.
"So it's been a beautiful, organic, relationship and we're really proud of it."
In addition to their work with the Heart and Stroke Foundation, the Folignos also have their own charitable organization called The Heart Playbook, which supports research on congenital heart defects and supports families going through similar challenges.
"With the platform that Nick has with the NHL, it's just to try to use it for good," Janelle said.
"We did struggle at a certain point being so public with her story. You know, we didn't want it to come across the wrong way. But at the end of the day, the reason we do choose to speak about it is that awareness piece."
Janelle said Milana has taken greater ownership of her story as she's gotten older, and is also becoming an advocate to bring more attention to congenital heart disease.