Constable: Half a heart, full helping of love (and Ronald McDonald House's help)
In the bustling Ingleside home, with four young kids scampering around a Christmas tree displaying no breakable ornaments on the bottom branches, here comes 2-year-old Amara Sherko, balancing a toy plate filled with plastic pastries. She struts up to the couch and politely offers her parents, Jason and Adrian, a piece of pretend cake.
That's adorable, and a far cry from those hospital days when Amara was hooked up to so many lifesaving contraptions that her monitor with all the flashing lights was dubbed the Christmas tree.
It was during a routine appointment at 22 weeks into Adrian's pregnancy that doctors "saw something wrong with the heart," her mom remembers. Amara was diagnosed with hypoplastic left heart syndrome, a life-threatening congenital heart defect.
"We were terrified," Jason says.
"She has half a heart," Adrian says, explaining how the left side of Amara's heart didn't develop a proper ventricle, mitral valve, aortic valve or aorta.
When Amara was born on April 28, 2017, at Advocate Christ Medical Center in Oak Lawn, "we knew right off the bat she'd need three open-heart surgeries to save her life," Adrian says. "We got to spend five minutes with her before she was taken away."
Avoiding a possible four-hour round-trip commute to their home in northern Lake County, the Sherkos split their time between the hospital and the Ronald McDonald House across the street from the hospital, with one parent always at Amara's bedside.
"They told us not to Google," Jason says, admitting that he didn't know until it was over that the Norwood procedure, Amara's first surgery at 6 days old, is considered a more extensive surgery than a heart transplant.
"They had someone writing everything down for us because we were deer in headlights," says Adrian, who would take naps and shower at the Ronald McDonald House but spent the majority of her waking hours in the Neonatal Intensive Care Unit. "I remember taking a picture of my feet at the Ronald McDonald House and my feet were three times their size because I was standing in the NICU all day."
Even after Amara came home, the baby had a feeding tube, an oxygen tube, a regimen of four medicines a day, and monitors. Jason, who teaches P.E. and driver's education at Conant High School in Hoffman Estates, missed the end of the school year to be with Amara. Adrian, who met her husband when she was a high school math teacher, was staying at home to care for the couple's older daughter Raegan, who is now 5, and son Kolton, now 3, when she had to adjust her time to be with Amara. Since Amara, the couple has added daughter Lucia, who is a year old.
James' parents, George and Lynda Sherko, helped care for the kids, as did Adrian's parents, Kent and Pam Hoefling. But they also got help from people at the Ronald McDonald House.
"Most families, when they arrive at the Ronald McDonald House, it's a big surprise. It's incredibly overwhelming," says Lisa Mitchell, vice president of programs and services for Ronald McDonald House Charities of Chicago and Northwest Indiana. "What families find is that everyone is in the same boat or has been on that boat. It almost makes it seem more normal."
In addition to beds, showers, meals, laundry and a place to bring their other kids, the Ronald McDonald House became a hypoplastic left heart syndrome resource for the Sherkos.
"You meet a lot of people who have gone through this," James says. "You just keep pushing on."
The Sherkos, and many of their family and friends, collect pop tabs through schools or other organizations as a way to raise money through recycling sales for the Ronald McDonald House. Adrian always brings homemade cookies when she stops into the house these days. "I remember coming back from the hospital at 2 a.m. and needing cookies," she explains.
The Sherkos figure they've spent 50 to 60 days at the Ronald McDonald House. With five houses, three family rooms in hospitals and two mobile medical units, the Ronald McDonald House Charities of Chicagoland and Northwest Indiana annually supports more than 10,000 kids and 30,000 adults, providing overnight accommodations for 40,000 people. The average stay is eight nights. While the charity asks those who can to donate $10 a night, there is no obligation to pay.
"We have so many fantastic volunteers," says Mitchell, who notes that people cook meals twice a day and food is available around the clock. To volunteer, donate or find out more, visit rmhccni.org.
Amara's parents know her so well now that they can tell if her oxygen level is low. But they also use a machine "to check your numbers," they tell Amara, who helps her mother wrap a strap around her big toe, and says, "No beep."
"She'll say, 'No beep,' because it will beep if her oxygen is not at a good level," Adrian explains.
When finished, Amara goes back to playing with her siblings. There are no clues that she's the one who's had three open-heart surgeries.
"We are immensely blessed that people who meet her would have no idea until they see her scar," Adrian says.
While Amara probably will need a heart transplant one day, she's thriving now. Things are going so well that the Sherkos surprised their kids with a vacation in Disney World for Christmas. In the meantime, they are just another suburban family with four young kids running around.
"To us, it just became our life. It is hard and exhausting," Adrian says. "But it is so fun."