MARICOPA — Lilyana McLaughlin is rare for a lot of reasons. The Maricopa seventh grader is a Leap Day baby — one of the less than 0.1% of people born on Feb. 29 — and her family says her loving nature and infectious laugh make her just as rare.
But McLaughlin also has a rare heart condition called dextrocardia, which has caused complications in her life since birth.
“When she came out, we found out that her heart was not only on the opposite side of the body, it was completely flipped over along with all of her internal organs and everything,” said Lily’s mom, Jenna Stetson. “So her whole entire body is a mirror image of what our body is.”
Doctors first sensed something might be wrong with Lily’s heart at around 16 weeks, and originally diagnosed her with another similar medical condition. Upon her arrival though, they realized she had dextrocardia. This caused some other issues with Lily’s heart, including aortic stenosis, where the aortic valve that supplies blood to her heart is unusually narrow.
Lily had two open heart surgeries before the age of 2 to help mitigate some of these medical problems. During her second surgery, Stetson described her horror as her daughter went into cardiac arrest in front of her.
“I noticed something just wasn’t right with her,” Stetson recalls. “Then she cardiac-arrested in my arms.”
Stetson was 21 at the time, and she remembers feeling totally overwhelmed as doctors worked to resuscitate her.
“I didn’t think that I was strong enough or prepared enough to be able to handle something like this,” Stetson said. “She was a strong kid.”
Lily pulled through that surgery, and the four more that would come after that throughout her childhood due to more complications like fistulas, or abnormal artery connections to the heart. She had three open heart surgeries in 2008, another in 2010 and two more in 2017 and 2018.
Stetson describes Lily as a warm and loving girl who loves to make others laugh, but also as a resilient warrior — one who has had to look death in the face many times during surgery.
“She marches to the beat of her own drum,” Stetson said. “She’s not angry about it, she’s an old soul in a little body, truthfully. She’s made peace with it.”
Post surgery, Stetson says Lily’s condition follows a pattern.
“She’s healthy, she did great,” Stetson said, “and then we start slipping, and that’s kind of how it always has been. That was when we finally saw that her heart started becoming enlarged.”
Enlarging of the heart is an indication of heart failure, and doctors estimate Lily’s heart is currently functioning at about 55% capacity. This year on June 7, Lily is scheduled for her seventh open heart surgery. This time, doctors will perform a surgery called the David procedure, where they will work to correct leakages happening in Lily’s aortic valve.
“We’re now coming to a time where we’re doing Band-Aid fixes,” Stetson said. “The end game is, she’ll have to have a heart transplant.”
Lily’s family is hoping she will be a candidate for an adult female heart, as the pool for organ donation is larger.
The 13-year-old has had to become well acquainted with hospitals, doctors and needles — which she dislikes the most. She’s also had to miss out on some of the activities kids her age enjoy due to her condition.
“She couldn’t do a lot of things kids could do,” Stetson said. “She wasn’t able to go roller skating, she couldn’t go join friends ice skating or on the trampoline because being on blood thinners was a risk of bleeding internally. You’re having to continuously watch your clotting factors. It was very, very hard.”
Lily was devastated when she couldn’t join her four siblings, Lucas, Austin, Skyler and Elaina, on the trampoline, and Stetson joked the universe had her back when the trampoline in question blew away in a haboob days later.
Instead, Lily has found a lot of joy in arts and crafts like painting and has a great knack for puzzles. When she’s finished, she proudly paints over her completed puzzles with glue and hangs them on her walls.
Though she has stated in the past she would love to grow up to be a “baby nurse” and help children like herself, Stetson says it’s painful for Lily to look to the future when the present remains uncertain for her.
“We live in the here and now with each other, and we’re grateful for this year,” Stetson said.
Lily and her siblings are now preparing for their June trip to California, where Stetson hopes to give the kids some time to relax in the days leading up to Lily’s surgery at Rady Children’s Hospital. Lily also has the support of both her dad, Christopher McLaughlin, and stepdad, Rick Stetson.
Lily’s family has the support of the Maricopa community too. Stetson has been chronicling Lily’s journey on social media for years and keeps Lily’s followers and friends up to date on her health.
To follow Lily’s story, visit the Facebook page Lilyana Princess Warrior.
To donate directly to Lily’s seventh heart surgery, visit her GoFundMe page.