Diagnosed as a toddler with a kidney disorder, Nikolas grew up accustomed to tiring quickly when running around with his friends, having a weak appetite and making frequent trips to the hospital for dialysis treatments.
When he was in kindergarten, the condition, nephrotic syndrome, went into spontaneous remission, giving him a few years of feeling like a “normal kid,” his mom, Lynette, said.
Then, in fifth grade, the now 13-year-old endured swelling in his face, abdomen, feet and ankles, a sign the condition had returned. His doctors at Ann & Robert H. Lurie Children’s Hospital of Chicago told the family Nikolas needed a kidney transplant for long-term survival.
“You don’t like to see your child going through all of this,” said Lynette. “It was frustrating, but we knew we were in the best care.”
Finding a donor nearby
When the family discovered a transplant was necessary, doctors and nurses explained details about what the surgery would entail, how it would help Nikolas and potential complications. Lynette said she had a phone number to call any time with questions, and she could always expect a clear answer quickly.
“Lurie Children’s staff was there for us all the time. They’re amazing people to work with. They walk you through the whole process,” she said.
When the family got the news they prayed for – that a family member, Nikolas’ aunt – was a match for Nikolas and could donate a kidney to him, it felt “like a dream,” Lynette recalls.
“I just didn’t know what to say any more. I was so excited, so happy,” she said.
His aunt, Lan, who has a nine-year-old daughter, said visiting her nephew in the hospital while he was experiencing kidney failure “shook her.” After physicians cleared her to be a donor, she quickly agreed to the next step in the process.
A leader in pediatric kidney transplants
Lurie Children’s is a national leader in pediatric transplant surgery, having performed the first pediatric kidney transplant in Illinois in 1964. In 2018, the hospital performed its 700th kidney transplant. Each year, nearly half of the kidney transplants performed at Lurie Children’s are from a living donor, like Nikolas’ aunt.
Furthermore, Lurie Children’s Siragusa Transplantation Center ranks among the top pediatric transplant centers in the country, not just in volume, but also in patient survival rates. The team is led by medical director Dr. Amy Bobrowski and surgical director Dr. Riccardo Superina and includes a committed team of physicians, surgeons, nurses, advanced practice nurses, dietitians, pharmacists and social workers.
Nikolas received his transplant in 2018, just days before Thanksgiving. Lynette and Nikolas’ dad, John, and brother, Shaun, enjoyed a holiday meal of turkey, stuffing and mashed potatoes thanks to hospital chefs.
“We were just fully absorbing everything,” Lynette said. “It was a very special Thanksgiving.”
Now in seventh grade, Nikolas said he feels noticeably better since his transplant. He loves playing basketball and running with friends. He no longer has to take breaks from playing to rest or nap.
“Before the transplant, if I ran for long I would get tired,” Nikolas said. “Now I don’t get tired as much.”
He and Lan, who has recovered from her part of the surgery and returned to cycling classes and other activities, enjoy catching up at family parties. The transplant has made their relationship – she is also his godmother – even more meaningful, Lan said.
“I look at the scars on the center of my abdomen and it is still surreal to me that a piece of me is inside him,” she said. “It is very special.”
For Nikolas, the best part is “now I feel normal.”