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A special heart: 2 surgeries haven’t slowed 4-year-old

March 3, 2019

GREENWOOD, S.C. (AP) — Paisley Cunningham has a special heart — one the 4-year-old girl is quick to celebrate.

She talks often about her heart-friends, and smiles wide with pride when she shows people what makes her heart so special. She has a scar running down her chest from open heart surgeries that began when she was only nine days old.

Paisley was born with a congenital heart defect called hypoplastic left heart syndrome, or HLHS. As she developed during pregnancy, the left side of her heart didn’t form correctly. As her mother says, though, Paisley might have half a heart, but she more than makes up for it in personality.

“Without seeing her scar, you’d never know there was anything wrong with her,” said Kim Rosa, Paisley’s mom. “One day she walked into her class and announced to her teacher ‘My name is Heather today, and I rode a dragon to school.’ I just laughed and said, ‘Well why did I have to get up to take you, then? Or was I the dragon?’”

Most birth defects are found before a child is born, but Rosa said doctors couldn’t get a clear enough view of Paisley’s heart during the ultrasound to tell. She was born without issue, but at just two days old Rosa noticed Paisley was breathing strangely, and while in the NICU she quickly became sick.

“The doctor came back to my room and told me she had half a heart,” Rosa said. “Through the first 10 months, we didn’t hit any developmental anything. She couldn’t even sit up.”

That’s because at nine days old Paisley had her first open heart surgery, and her second at nine months. For her first surgery, she wasn’t even stable enough to be flown in a helicopter to Charleston for the surgery — she had to be put in a hyperbaric chamber aboard an airplane.

Doctors can’t just make the other half of Paisley’s heart. The surgeries she’s gone through are to reroute the way blood flows through the parts of the heart she’s developed, but it’s come at the cost of constantly having much lower blood-oxygen levels than the average person, along with a compromised immune system. Her third heart surgery, which is coming up soon, will come with its own challenges down the line for Paisley, but should improve her oxygen levels.

Low oxygen means when Paisley runs around a lot or gets winded, her lips might turn blue. This was especially panic-inducing early on, when relatives and friends unknowingly handed Paisley any treat or candy that would stain her mouth blue. There’s not enough oxygen flowing through her body, so some tasks tire her more than they would other people.

“Considering how low her blood oxygen is, I have no idea how she runs around with so much energy,” Rosa said, laughing.

A group that has helped provide assistance and hope for Paisley’s family is the Emerson Rose Heart Foundation. The Clemson-based foundation works to help families affected by congenital heart defects and push for improvements in treatment and research. Paisley has become an ambassador for the group and has featured in awareness campaigns sharing her story.

Meet-ups and events organized for heart-families provide perspective and hope for Rosa and her family, as well as creating a network of friends for Paisley who share similar situations.

She also gets a lot of support from her school. Paisley is a kindergartener at the Greenwood Early Childhood Center, and she makes friends everywhere she goes. Within her first two weeks at the school, she was chatting with all the teachers and staff and knew nearly everyone’s names.

“The thing about Paisley is that there’s a great big personality in that itty-bitty girl,” said school director Virginia Metts.

On Valentine’s Day, Rosa asked if Paisley’s class wouldn’t mind wearing red to show support for heart health during National Heart Month.

“Well, first she invited just our class to dress in red, but we decided the whole school should do it,” said Anna Clark, Paisley’s teacher. “It was touching to see the whole school come out in support. We all love Paisley.”

Nearly everyone in school was dressed in red when Paisley went to school that day.

“What went through my mind? This little girl was meant to change the world,” Rosa said. “She’s leaving her footprints everywhere.”

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Information from: The Index-Journal, http://www.indexjournal.com