An online search for "dance your heart out" returns more than 1 billion hits. But 10-year-old Olivia Donnelly of Naperville redefines that expression.
"It's a break from the outside world. I dance by myself every day," Olivia says, adding that she doesn't even need music to dance her heart out. She did, however, need a couple of new hearts.
"I feel way better after the second transplant," Olivia says.
Olivia, her parents, Lisa Pantera-Donnelly and Brian Donnelly, and little brothers, Jack, 5, and 16-month-old Tommy, are the faces of the summer fundraising efforts of the Ronald McDonald House Charities of Chicagoland & Northwest Indiana, having made temporary homes at three of the Ronald McDonald House locations during Olivia's heart surgeries and transplants. Details of the campaign are at rmhccni.org.
"Olivia is a resilient kid and has such a fantastic spirit," says Holly Buckendahl, CEO of that Ronald McDonald House Charities branch. "They've had quite a journey."
The adventure for Brian and Lisa, both 37, started when they were members of the Class of 2000 at Hinsdale Central High School. Technically, Brian, who lived in Oak Brook, and Lisa, who grew up in Hinsdale, did go to the prom together, but they were with different dates as part of a larger group. It wasn't until after she graduated from Indiana University and he got his undergraduate degree from Kettering University in Michigan that they became a couple and married in 2006.
Three years later, Lisa was just four or five weeks into her pregnancy when she had this thought: "What if something is wrong with the baby?" she asked her husband.
"Mother's instinct," Brian says in hindsight.
Lisa was looking forward to an ultrasound at 16 weeks revealing the gender of their baby, so she could start planning.
"But that's not really why they do those ultrasounds at 16 weeks," she says.
"They said they saw an anomaly," remembers Brian.
Olivia had a rare spontaneous defect in which her heart had only three of the four chambers.
"She had no left ventricle," Lisa says.
Doctors explained that Olivia would need a surgery in her first week of life, another between four and nine months, and a third between the ages of 2 and 5 years old. As a teen or young adult, she'd probably need a heart transplant.
Instead of having their baby close to home at Edward Hospital in Naperville, Lisa gave birth to Olivia March 27, 2010, at Advocate Christ Medical Center in Oak Lawn. "Then they wheeled her over to the NICU," the newborn intensive care unit at Advocate Children's Hospital Oak Lawn. Brian got a quick photo of Olivia before they put her on a ventilator and in a medically induced coma, which is how their baby looked when Lisa recovered enough to visit her.
With Olivia as the first grandchild on both sides of their family, grandparents Dan and Anna Pantera, of Naperville, and Ed and Sue Donnelly, of Oak Brook, helped. "Brian watched Olivia and my mom watched Brian," Lisa quips.
They spent many weeks at the Ronald McDonald House. Brian would get up at 4 a.m. to go to his office in Batavia, then stop in to visit his wife and daughter for 90 minutes on his way to classes at the University of Illinois at Chicago. A manager of a research and development team for a consumer goods company in Schaumburg, Brian took advantage of the Family Leave Act after Lisa's maternity benefits ran out and she went back to work handling customer service and marketing for a medical distributor in Bolingbrook.
"Olivia's first outing was Brian's graduation for his MBA," Lisa says of the May 2010 ceremony.
After her successful first surgery when she was 4 days old, Olivia's second surgery on Aug. 5, 2010, also was a success. Olivia had her third surgery in May 2012, when she was an otherwise healthy 32-pound 2½-year-old who was walking and talking. Ten days later, she had complications, including an abnormal heart rhythm and a chest infection, and she went into heart failure on her mom's 30th birthday.
"It was absolutely devastating because it wasn't part of the plan," Brian remembers. "We cried for 15 minutes."
After an appointment the week before Thanksgiving, doctors called them at home.
"Her levels are horrible," Lisa remembers them saying. The next morning they took Olivia to Lurie Children's Hospital, where they expected her to wait between six weeks and three months for a suitable heart donor.
"It took six days," Lisa says.
"It took longer to get the insurance approved," Brian added.
On Nov. 27, 2012, Olivia received the heart of a little girl whose parents "made a selfless decision," the couple say.
Olivia came off the ventilator on Nov. 29, Brian's 30th birthday. She quickly regained some of her spunk. "I did pull the feeding tube out," says Olivia, who recovered in a few weeks. The family stayed at the Ronald McDonald House near Chicago's Lurie Children's Hospital before coming home on Dec. 22, 2012.
"She did fantastic. Life was good, and they couldn't believe she was a transplant kid," Lisa says of the following six years. Olivia loved her dance classes, school and her brothers, Jack and Tommy.
Then, during a rather routine checkup and echocardiogram on May 2, 2019, Olivia suffered a heart attack.
"It's never good when a doctor, a chaplain and a hospital security guard walk out to meet you," Brian says.
"It sounds like a setup to a joke, but it wasn't," Lisa notes. "They had her on life support for two weeks."
Her condition was so touch-and-go that the parents stayed in a special Ronald McDonald House room in the hospital so they could respond quickly. But Olivia rebounded.
"She walked in a 5K and danced in a recital just a week after being discharged from the hospital after her medical crisis," her mom says. But her heart was failing.
"It was scary at 2. You don't really know anything," Olivia says of her heart transplants. "At 10, it's a different perspective. And when you find out you need a heart transplant, it's terrifying."
Even in the hospital, she had friends, such as the hospital's child life specialist "and an anesthesiologist I've known for years," Olivia says.
She received her second heart transplant on Dec. 23, 2019.
"She actually FaceTimed me from the hospital to wish me a merry Christmas, and asked me to bring her presents downtown," her mom says. Her parents celebrated Christmas in the hospital, and because Olivia was still "out of it" and didn't remember it, they re-wrapped her presents and celebrated at home a month later.
After her transplant, Oliva had to take precautions to avoid getting sick.
"She was wearing masks before it was cool," says her father, who remembers ordering N95 masks in a floral print before COVID-19 arrived and masks were hard to find.
"I only missed one dance class," says Olivia, who loves lyrical and jazz dance. She started fifth grade online this week at May Watts Elementary School in Naperville. She gets together with friends and partakes in their book club discussions.
"We sit 6 feet apart and have a table in the middle so we don't go near each other," says Olivia, who wishes everybody would follow their example. "How is this supposed to get better if people don't care about each other and themselves?"