Published: Saturday, Jan. 17, 2015 12:05 a.m. CST • Updated: Saturday, Jan. 17, 2015 12:11 a.m. CST
By CHELSEA McDOUGALL – firstname.lastname@example.org
CARY – In November 2013, Demetri and Eleni Tsilimigras ordered invitations to the baptism for their twin babies.
On Jan. 12, 2014, family and friends were to be invited to St. Sophia, a Greek Orthodox Church in Elgin, to celebrate twins Pano and Katina’s baptism.
But soon, the Cary family’s plans for a baptism were derailed.
That same November, baby Pano started showing signs of what doctors first thought was acid reflux. He was vomiting. He was weak. He was tired.
Further testing revealed not acid reflux, but cardiomyopathy – a disease of the heart muscle that can lead to heart failure. Doctors rushed him to the cardiology unit at Lurie Children’s Hospital in Chicago, and he immediately underwent emergency open-heart surgery.
Then his parents got news that would knock the wind out of them. It wasn’t what they thought. It was worse.
At 6 months old, Pano’s heart was working at only 10 percent of its capacity and he needed a heart transplant.
“Our world just came crashing down,” Eleni said. “I was hysterical. I couldn’t breath. It was a dagger in my heart, I was numb.”
Added Demetri: “We could have lost him.”
Pano languished two long, agonizing months in critical care while his parents waited for a heart.
And though Pano’s heart may have been broken, his spirit wasn’t.
“Even when he was intubated with tubes everywhere, he was smiling,” Eleni said. “That’s what makes him so amazing.”
Early in the morning on Jan. 11, 2013, the family got the call. Doctors had a heart for Pano, and a heart transplant surgery was scheduled for minutes after midnight the next day.
The surgery was Jan. 12. The same Jan. 12, when he and his twin sister were scheduled to be dedicated to God.
“God was sending us a message that he will be OK,” Eleni said. “It was remarkable.”
The family – also including 3-year-old Anthi – call Pano their “thávma,” the Greek word for miracle.
As the family celebrates the 18-month-old boy’s “heart-iversary” as they call it, the baby who donated the heart is never far from their minds.
“We were celebrating, and there was a family out there grieving,” Eleni said. “I kept thinking, ‘God rest that baby’s soul.’ And ‘Thank you.’
“I celebrate that child’s life. Every time I go to church I light a candle for the baby that saved Pano,” she said.
Today Pano is a bit developmentally delayed, but he has a slew of therapists working to catch him up. In all, he had three major surgeries and remains on a strict regimen of medications, including anti-rejection drugs he will take for the rest of his life.