Matt and Lauren Backe can’t heal their 4-year-old daughter’s rare congenital heart diseases.
They can’t erase what their daughter, Everly, already has gone through – three open heart surgeries, the first at three days old – or prevent her from having to undergo even more surgeries in the future.
But what they can do is let her know she’ll never be alone. Through the years, the Crystal Lake couple has delivered that message in numerous ways through involvement in organizations, fundraisers and awareness campaigns for congenital heart disease, or CHD.
What’s garnering nationwide attention these days is a simple tattoo.
The older Everly gets, the more aware she becomes of the scar on her chest, a scar the family calls her “zipper,” so Matt Backe decided to become her “zipper buddy.”
He recently got his first tattoo – a replica of Everly’s scar on his chest.
“It just kind of hit me I wanted to do it,” Matt Backe said. “It was a combination of hearing her talk about it and knowing as she grows older, by nature, she’s going to be more self-aware. I wanted her to not be alone or shy about it.”
As soon as Matt came home with his tattoo, Lauren Backe went and got her first tattoo – an EKG on her left arm featuring the initials of both of her children, Everly and 9-year-old Jack. The couple posted a photo of their new tattoos on Facebook, not thinking much of it.
In Matt’s words, it simply “snowballed.”
Chicago broadcast media picked up on the story, and the family recently found themselves featured on Good Morning America and contacted by People magazine.
“My wife and I are just floored to be honest with you,” Matt said.
“We had zero idea anyone would like this story so much,” Lauren said. “When we were asked to share it, initially we were shocked. We had no idea people would react as strongly or emotionally to it as they have. But we are willing to share it if it raises CHD awareness and awareness of the incredible things hospitals are doing for these kiddos.”
Treated at Advocate Children’s Hospital in Oak Lawn, Everly’s unique heart defects were caught in utero at 33 weeks. She has interrupted aortic arch, aortic stenosis, subaortic stenosis, hypoplastic bicuspid aortic valve and a large posterior misaligned ventricular septal defect, essentially a hole in her heart.
Before Everly was born, doctors told the family about the surgeries she’d need immediately after birth and the physical limitations she’d likely face.
“Right now, she’s kind of on borrowed time with the last surgery,” Matt said. “... She’s at the point right now where she’s started to decline a bit. … I would say within the next year she’ll be looking at another open heart surgery.”
She tires more easily than children her age and her face sometimes swells a bit, but the 4-year old her family describes as “sassy” is able to do all the things children her age can do – go to preschool, take dance classes, play with her Barbies. She just needs daily naps.
“If you didn’t know it, you likely wouldn’t know anything was wrong with her,” said Matt, who feels thankful for the “amazing team” around his family at Advocate Children’s Hospital.
The family has done all they can to support the hospital and Ronald McDonald House Charities, which provided them a free room near the hospital during Everly’s long hospital stays, as well as other causes related to CHD.
Lauren serves on the Red Tie Ball Committee for the Children’s Heart Foundation, the Advocate Children’s Hospital Family Advisory Council and the board for LJ’s Healing Hearts, www.ljshealinghearts.com. The nonprofit LJ’s Healing Hearts supports the emotional well-being of CHD families with programs, such as Beads of Courage at Advocate Children’s Hospital, and provides financial support, such as parking passes at Lurie Children’s Hospital.
She also works with Brave Gowns and has joined seven other CHD families to host a gown drive for Chicago area families. The drive provides soft, bright-colored hospital gowns to give children a sense of courage and normalcy during a scary time.
Together, the family has helped area schools kick off Kids Heart Challenges for the American Heart Association this month as part of American Heart Month. Congenital Heart Defect Awareness Week ran through Feb. 14. And they’ve set up an area blood drive for the Red Cross on April 24.
They’ve also collected 2 million pop tabs, with a goal to reach 3 million, for Ronald McDonald House Charities. About 1,128 pop tabs equal one pound and bring in 40 to 50 cents in revenue. Through the nationwide Pop Tab program, an average of $6,000 a year goes to Ronald McDonald House.
Through the foundation Books That Heal, the proceeds of a book, “Happily Everly After,” co-authored and illustrated by Jack and Everly in 2019, have gone to Advocate Children’s Hospital: Heart Institute. And the small online shop The Lucky Lemon, based in Crystal Lake, is making bracelets in honor Everly, with the proceeds going to LJ’s Healing Hearts.
All this, and now the tattoos.
“I hope sharing Everly’s story and Matt’s new tattoo resonates with someone who either has a scar and can relate or helps a family to feel connected and not alone if they’ve just received a CHD diagnosis,” Lauren said.
Perhaps it may even inspire someone to become a pediatric cardiologist, nurse, surgeon, child life specialist or something of that nature, she said.
Upon first hearing of Matt’s tattoo idea, it was actually Lauren’s mother who gifted him a gift certificate for Dark Heart Tattoo in Crystal Lake, where artist Kyle Gibbs gave both Matt and Lauren their tattoos.
“I’d never done a tattoo like that ever,” said Gibbs of Matt’s tattoo, who also never expected the story to generate such interest. “It was kind of new to both of us.”
As he endured the needle, Matt told Gibbs, “If my daughter can go through all that she has gone through, I can get a simple tattoo.”
“When I got home, she said, ‘Dad, why are you copying me?’” Matt said.
“You just want to be special like me,” she told him.