New Blackhawks forward Nick Foligno readily admits he enjoys talking about the foundation he runs with his wife, Janelle, even more than he enjoys talking about hockey.
Inspired by his daughter Milana’s journey to overcome the congenital heart defect with which she was born, the foundation — called The Heart’s Playbook — supports research and provides inspiration for children dealing with heart disease.
And since the foundation launched in 2020, it has had a supporter in Hawks general manager Kyle Davidson, who himself has overcome a congenital heart defect known as Tetralogy of Fallot.
“What’s really neat is, when we started our foundation, Kyle wrote my wife a beautiful message on our website and said how thankful he was,” Foligno said. “It meant so much to us. It gave us encouragement of, ‘We’re doing the right thing here.’ That was something you don’t forget.”
Added Davidson: “I know with my parents, it was a really difficult time — you don’t know what’s to come for your child. I wanted to reach out and thank them for what they were doing, and also make it known that I’m someone that has gone through a defect as well...but it hasn’t held me back.”
Foligno and Davidson have known each other since crossing paths in the mid-2000s in Sudbury, Ontario — where Foligno played his junior hockey and Davidson grew up — but hadn’t kept in close touch.
Since Davidson convinced Foligno to sign a one-year contract with the Hawks in June, however, they’ve begun reconnecting over their similar experiences in the realm of cardiology. And once the Folignos arrive in Chicago this coming week, the city will become one of the new epicenters of The Heart’s Playbook’s outreach and investment.
It was 10 years ago this October when Nick and Janelle’s world was first “rocked” by newborn Milana failing the 24-hour pulse oximetry test.
“We were excited first-time parents, and we didn’t really have a clue until she was born that she was going to have a congenital heart defect,” Foligno said. “You learn quickly. It humbles you, too, because you learn you have to put care of the child in someone else’s hands.”
Milana was diagnosed with Moderate Tricuspid Regurgitation and Mitral Valve Arcade, meaning her mitral valve — which keeps blood flowing in the correct direction through the heart — needed replacement.
Three weeks later, the Folignos flew from Columbus — where Nick was in his second of nine seasons with the Blue Jackets, for whom he later became captain — to Boston Children’s Hospital for an experimental surgery that wasn’t yet FDA-approved.
The successful operation, orchestrated by Dr. Wayne Tworetzky and conducted by Dr. Sitaram Emani, made Milana just the 17th person ever to have a Melody Valve inserted into her heart.
“[If this happened] a few years before she was born…they would’ve attempted a really risky surgery, and she probably wouldn’t have made it,” Foligno said. “Thankfully, with the research this one doctor did of turning a valve upside down and trimming it to fit a child, it’s what saved her life.”
Milana’s heart continued to require constant monitoring and care throughout her early childhood, and when she needed another valve-replacement surgery in fall 2018 (at age 5), Janelle wrote her a poem to read in the hospital.
“When we were looking [for advice about] how you cope with a daughter with a congenital heart defect, there’s so much literature out there, but there’s not a lot to inspire and normalize it for a child,” Foligno said. “That’s what she was doing with this poem — describing in her words what it meant so that Milana felt empowered, not frightened.”
That poem sparked the idea for a children’s book, titled “Dear Heart,” which Janelle published in 2020. Around the same time period, the Folignos realized they wanted to expand their support for cardiology research in children into something bigger.
The couple had already given matching $500,000 donations to both Boston Children’s Hospital and Nationwide Children’s Hospital in Columbus back in 2016 — a community service for which Foligno received the NHL’s King Clancy Trophy. A full-fledged foundation, however, would allow them to do even more for the roughly 40,000 babies born with congenital heart defects in the U.S. each year.
“We knew there was something we wanted to do in return for all the help we had gotten from others,” Foligno said. “Milana has given us a purpose to continue on and make sure we’re helping the next Milana in the world.”
Foligno was serendipitously able to sign with the Bruins in 2021, allowing him to give back to Boston through hockey and also let Milana learn to call it home. Last season, he helped make a Bruins-Capitals game into “Heart Health Night,” from which proceeds supported The Heart’s Playbook.
In July, Boston Children’s Hospital started a two-year fellowship program — funded by The Heart’s Playbook — for a pediatric cardiologist to learn under Tworetzky. The hospital is also using funding to develop innovations like valves grown in petri dishes and 3D-printed hearts on which to practice surgeries, Foligno said.
Human-to-human outreach to children and families dealing with heart defects is another big part of The Heart’s Playbook’s purpose, and Milana — now a 9-year-old in stable health — has increasingly taken ownership of that.
“She understands her responsibility and the duty she has to help others,” Foligno said. “Especially around the holidays, she’ll come with us and see the other families, and it’s great for them to see her. She tells them, ‘I used to be there in that hospital bed. You’re going to get to this point.’”
This fall in Chicago, Foligno is looking forward to both his 17th NHL season and to Milana’s chance to meet Davidson, a role model for what someone with a heart defect can achieve career-wise.
Davidson said he’s excited for that meeting, too. In the meantime, he has already connected the Folignos with several recommended cardiologists around the city.
“When I moved down...it put my mind at ease and made me feel much better knowing I had that care,” Davidson said. “I wanted to make sure he had the access to find similar care for his daughter and feel at home, too.”
And while The Heart’s Playbook will continue supporting the research happening at Boston Children’s Hospital, Foligno intends to expand its impact into Chicago as soon as possible.
The “million-dollar question,” Foligno confessed, involves his plans for the foundation after he retires from hockey. But at the moment, that’s a question for the future.
“Wherever we play, we plan on making it home, so I feel the same way about Chicago,” he said. “We plan on definitely getting involved with children’s hospitals there and seeing how we can help. When you get supported by the community you play in, part of your job is to be part of that community, as well. That’s what we’re going to do.”
