Lauren Backe was 33 weeks pregnant when an ultrasound technician noticed something unusual about the baby’s heart measurements.
After a fetal echocardiogram revealed more details, a doctor sat down and said, “Your baby won’t be able to go home until she has 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 on her 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 for the fourth time to remove an infection.
The operations have left a visible mark on her chest of which the now 4-year-old girl is becoming increasingly aware.
“She can tell you, ‘I have this scar because the doctors fixed my heart. I have this zipper here,’” her 37-year-old mother said today.
“sometimes she asks why she has it and other people don’t, and then she reminds herself: ‘I have a special heart.’ we tried to use the word special instead of sick so that it frames it a bit more positively for her.”
but everly is no longer the only person in her family with a “zipper”. Last month, her dad got a tattoo on her chest that resembles her scar so that if they go to the pool or the beach, she always has someone near her with a similar mark.
“I just realized that she had been asking more questions about it and was apparently becoming more aware of her scar,” Matt Backe, 37, said today.
“I thought as she gets older, I imagine she’ll only become even more self-aware, so I was just trying to help her not feel like she was the only person who had it…something so she didn’t feel alone .”
The tattoo was a Christmas present
everly was born with an interrupted aortic arch, aortic stenosis, subaortic stenosis, hypoplastic bicuspid aortic valve, and a large misaligned posterior vsd, her mother said.
essentially means the aorta, the body’s largest artery, hasn’t completely formed, along with other serious problems.
this is a very rare combination, but congenital heart defects overall are the most common type of birth defect, affecting nearly 1% of babies born in the us. uu. each year, according to the Centers for Disease Control and Prevention. the causes of most cases are unknown.
Of affected newborns, about 25% have a critical congenital heart defect that usually requires surgery in their first year of life.
everly will have to have a fourth open-heart surgery soon, but she can do a lot of the things a typical 4-year-old does: she attends preschool a couple of hours a day, she goes to dance class, she likes to dress up and celebrate birthdays.
He has heart failure, which doctors are trying to control with medication, so he is more tired than other children, needs more rest, and has facial swelling. Her parents watch for signs of problems, such as her turning blue or appearing dehydrated because of the diuretics she must take.
The couple has learned how to use feeding tubes, oxygen tanks and other equipment to care for their daughter between medical appointments. Lauren Backe used to work as a teacher and literacy coach, but now she spends her time on Everly’s needs.
The family, which also includes Everly’s 9-year-old brother, Jack, rarely strays far from their home in Crystal Lake, Illinois to create a bubble safe from COVID-19.
After Matt Backe brought up the scar tattoo idea last year, his mother-in-law bought him a gift certificate from a nearby tattoo parlor for Christmas. She brought a photo of Everly’s “zipper line” to the January date, which helped the tattoo artist draw a similar shape on her chest. The actual tattoo, the first ever done by Matt Backe, took about 30 minutes to create.
“The tattoo artist said, ‘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 been through.”
The girl’s first comment when she saw the tattoo was, “Daddy, 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 “clean” and has been comparing it to her own scar.
Lauren Backe tattooed herself and got a wrist tattoo showing 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 salesman, said he finds it “very strange” to see himself shirtless in photos on social media and in the news, but he keeps telling himself it’s all to raise awareness of congenital heart defects .
“Maybe that will make a difference for some other family because they won’t feel so alone when they get a diagnosis,” added his wife.
“you’re not alone…there’s a lot more support than I thought.”
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 mother remains hopeful.
“I try very hard not to think about how long he will live, because I think there is a very good chance that there will be more technological and scientific advances to improve his life,” he said.
