Young heart patient is on superhero mission

Paige Sullivan was born with two rare, mostly hidden qualities. One was a life-threatening medical condition. The other was a secret superpower.

She came into this world with a defect in which one of the two arteries that feed blood into the heart — in Paige’s case, the one that feeds the left side of the heart — was malformed.

“We were lucky,” her mother, Racine McCullough, said, because doctors discovered the malformation when Paige got sick as a baby. Chest X-rays found pneumonia but also revealed the problem with her heart.

McCullough eventually brought Paige to Dr. Angelo Milazzo, a pediatric cardiologist at Duke University Medical Center, who assured McCullough the problem could be fixed but said the timing had to be right.

“The best age is usually 8 or 9 years old,” said Milazzo, who in his 15 or so years in practice has seen about a half-dozen cases of children with similar conditions. Coronary arteries are tiny, Milazzo said, and waiting until the child has grown a bit makes it easier for a surgeon to make the repairs.

In the intervening years, Milazzo said, it’s possible for a child with this malformation to have a heart attack with little or no warning and without its being triggered by even the regular exertion of childhood. So except for forgoing rigorous competitive sports, he said, Paige should live the life of a child.

“That doesn’t keep the mom from worrying,” he acknowledged.

McCullough did worry, but she didn’t tell Paige why or how much. She let her daughter take ballet, and hip-hop dance, and play with the cousins who surrounded her where they were living, in Kannapolis, outside Charlotte.

“I did have some restrictions,” McCullough said.

When Paige wanted to be a cheerleader, for instance, her mother gently steered her toward less strenuous activities. Luckily, McCullough said, Paige learned early to read and has always loved books, science and children’s museums.

As time grew near for the surgery, McCullough relocated from Kannapolis with Paige and her younger sister to be closer to the doctors who would treat her. They rented an apartment outside Chapel Hill in August 2015. As Paige started third grade at Seawell Elementary School, McCullough went back to school, at UNC, to pursue a degree in sociology.

“It was a tough year,” McCullough said. With the relocation to a new school, and away from her extended family, Paige felt lonely and anxious. When the date was finally set for the surgery — right after Paige’s 9th birthday, in June — Paige and her mother were both feeling the stress.

But the night before, “We had 20 or 30 people here,” McCullough said. Aunts, uncles, cousins, sleeping on the couch and the floor of the apartment, all in town to accompany Paige to the hospital. That morning, Paige said, they all stood in a hallway at Duke as she was wheeled away to the operating room.

“I waved,” she said, “And then I feel asleep.”

The surgery was successful but was followed by a series of setbacks that required repeated trips back to hospitals, McCullough said. One readmission lasted a week.

In those long hours when it was just McCullough and Paige in the hospital room together, they talked about what Paige had been through, what had been the hardest and what had helped.

McCullough and Paige’s doctors took to calling her “our little superhero,” and in the quiet of the hospital room, it occurred to McCullough that, “A superhero needs a superhero cape.”

So she found a seamstress in Carrboro to make one as a surprise for Paige. It’s red, and when she spins, it swoops.

Paige loved it. Later, she told her mom she thought other children would love having one too, and once Paige started feeling better, the pair began making them. Neither sews, so they use glue, Velcro and ribbon.

They have made hundreds of the capes, simple cotton coverups they have distributed to pediatric patients at Duke and other medical facilities, and to children whose families have heard about the project and asked for them. Saturday, they worked on several to be given to children who will spend all or part of the Christmas holidays in the hospital.

When she delivers them, Paige likes to wear her cape, and she tells the children she meets, “Embrace the cape. Embrace your superhero.”

On Feb. 1 — the first day of National Heart Month — McCullough and Paige expect to release a self-published book Paige has produced for children undergoing surgery.

“There were things I would have liked to know,” Paige said. There is a numbing cream that makes shots hurt less, for example. And a CT scan doesn’t hurt at all. She was scared of that for nothing.

When she gave her the cape, McCullough thought her daughter was a superhero for her ability to withstand all the medical procedures and, despite a few tears, keep smiling.

Turns out, Paige has another superpower.

“It made me feel good,” to be called a superhero, she said. Now, when she gives another child a cape, “It makes them feel good to know that they’re like a superhero. They’re being great.”

This story was originally published December 17, 2016 at 5:57 PM with the headline "Young heart patient is on superhero mission."