Lauren Backe was 33 weeks into her pregnancy when an ultrasound tech noticed something unusual about the baby’s heart measurements.
After a fetal echocardiogram revealed more details, a doctor sat Backe down and said, “Your baby is not going to be able to go home until she has an open heart surgery,” she recalled.
Everly Backe was born in suburban Chicago in August 2017 with a complex congenital heart defect that required surgeons to operate three times before she was 1 year old. The first open-heart surgery took place three days after Everly’s birth, when her heart was the size of a walnut. Her chest had to be opened a fourth time to clear out an infection.
The operations have left a visible mark on her chest that the now 4-year-old girl is becoming more aware of.
“She can tell you, ‘I got this scar because the doctors fixed my heart. I have this zipper line here,’” her mom, 37, told TODAY.
“Sometimes she’ll ask why she has it and other people don’t, and then she’ll remind herself, ‘I have a special heart.’ We try to use the word special instead of sick so it frames it a little more positively for her.”
But Everly is no longer the only person in her family with a “zipper line.” Last month, her dad got a tattoo on his chest that looks like her scar so that if they go to the pool or a beach, she’ll always have someone else close by with a similar mark.
“I just had noticed that she had been asking more questions about it and seemingly was just becoming more aware of her scar,” Matt Backe, 37, told TODAY.
“My thought was as she grows older, I imagine she’s only going to become even more self-aware, so it was just try to help her not feel like she was the only person who had it... just something so she didn’t feel alone.”
Tattoo was a Christmas gift
Everly was born with an interrupted aortic arch, aortic stenosis, subaortic stenosis, hypoplastic bicuspid aortic valve and a large posterior malaligned VSD, her mom said.
It essentially means the aorta — the largest artery in the body — didn't form completely, plus other serious problems.
This is a very rare combination, but congenital heart defects in general are the most common type of birth defect, affecting almost 1% of babies born in the U.S. each year, according to the Centers for Disease Control and Prevention. The causes for most cases are unknown.
Of the affected newborns, about 25% have a critical congenital heart defect that usually requires surgery in their first year of life.
Everly will have to undergo a fourth open-heart surgery soon, but she gets to do a lot of things a typical 4-year-old does: She attends preschool a couple of hours a day, goes to dance class, likes to dress up and celebrate birthdays.
She’s in heart failure, which doctors are trying to manage with medication, so she gets more tired than other kids, needs more rest and experiences facial swelling. Her parents watch for signs of trouble such as the little girl turning blue or seeming dehydrated due to the diuretics she must take.
The couple has learned how to use feeding tubes, oxygen tanks and other equipment to take care of their daughter in-between medical appointments. Lauren Backe used to work as a teacher and a literacy coach, but now devotes her time to Everly’s needs.
The family, which also includes Everly’s 9-year-old brother, Jack, rarely ventures far from their Crystal Lake, Illinois, home to create a COVID-19-safe bubble.
After Matt Backe mentioned the scar tattoo idea last year, his mother-in-law bought him a gift certificate from a nearby tattoo parlor for Christmas. He brought a photo of Everly’s “zipper line” to the appointment in January, which helped the tattoo artist to draw a similar shape on his chest. The actual tattoo — the first one Matt Backe has ever gotten — took about 30 minutes to create.
“The tattoo artist was like, ‘So you know this is going to hurt, right? Because it’s right on your bone,’” he recalled. “It didn’t feel great, but it pales in comparison to what Everly has gone through.”
The girl’s first comment when she saw the tattoo was, “Dad, why are you copying me?” Lauren Backe recalled. “In her sassy tone, she says, ‘You just want to be special like me.’”
She now thinks the tattoo is "neat" and has been comparing it to her own scar.
Lauren Backe got inked herself, getting a tattoo on her wrist that shows an EKG line with her children’s initials on each side.
The story went viral after the family shared it online. Matt Backe, a commercial insurance salesperson, said he finds it “very odd” to see himself shirtless in photos on social media and in news stories, but keeps telling himself it’s all for congenital heart defect awareness.
“Maybe that will make a difference for some other family because they won’t feel so alone when they get a diagnosis,” his wife added.
“You aren’t alone… there’s so much more support out there than I realized.”
When Lauren Backe was still pregnant and asked about Everly’s future, doctors told her the girl would live to adulthood — defined as 18 years old. Her heart turned out to be in worse condition than when the family received that prognosis, but her mom stays hopeful.
“I try really hard not to think about how long she’ll live, because I think there’s a really good chance that there will be more technological and scientific improvements to improve her life span,” she said.
