Rockdale boy wasn’t expected to live past birth, and now he’s student of the month

Lots of parents are proud when their children are honored as student of the month.

But when 6-year-old Niko Rodriguez of Rockdale received that honor in December for his hardworking, upbeat attitude at Lynne Thigpen Elementary School in Joliet, his mother Brianna McEvilly said she cried.

To McEvilly, Niko’s accomplishment is a miracle due to the severe medical issues he faced shortly after conception. She feels Niko is a testament to their faith and resolve to not give up on him.

Kait Poronsky, a special education teacher at Lynne Thigpen Elementary School in Joliet, nominated Niko for student of the month. This is Poronsky’s second year working with Niko and, despite Niko being “medically fragile,” he’s a “super happy kid” who is always “ready to go with a huge smile on his face.”

“It’s a very different year for our kids,” Poronsky said. “A lot of what we do is hand-over-hand in the classroom. We use manipulatives and those are hard to replace during remote learning. But that hasn’t brought Niko down at all. He’s happy every morning on Zoom with the same huge smile. He’s excited to see his classmates; he’s excited to see his teacher.”

Poronsky also praised Niko’s willing to give any project “his all,” even when he’s obviously getting tired.

“He’s always game for whatever we’re doing and tries his best,” Poronsky said, adding that, during remote learning, Niko’s parents have replaced that one-on-one help Niko receives in the classroom. “He was really excited to be able to show Mom and Dad what he can do.”

McEvilly said she and her fiancé Abel Rodriguez, Niko’s father, first learned Niko had “severe abnormalities” at her first ultrasound appointment when she was 7 weeks pregnant.

“They saw a leak in his heart and his blood wasn’t flowing as it should,” McEvilly said.

At this point, and then again three months later, McEvilly said she was offered an abortion. She refused both times.

“We didn’t care if we held him for one hour or 17 years. It did not matter to use,” McEvilly said. “We, as parents, did not care what was wrong with him as long as we got to see him.”

As the pregnancy progressed, McEvilly had weekly ultrasounds. She learned Niko also had a cleft lip and palate. Doctors also thought he might have a trisomy disorder, a condition caused by an extra chromosome and the leak in Niko’s heart grew bigger, she added.

“We had no idea what to expect when I gave birth,” McEvilly said. “The doctors pretty much only gave him a week and said I might not even be able to hold him when he was born, that he might not be breathing or crying.”

McEvilly’s labor was induced at 37 weeks so doctors could start addressing Niko’s health issues. But in McEvilly’s 26th hour of labor, Niko’s heart rate escalated, and doctors decided to do an emergency Cesarean.

But Niko had other plans.

McEvilly said Niko was out in three pushes. He breathed; he cried, and McEvilly got to hold him.

“He did everything they said he was not going to do,” McEvilly said. “We were shocked and happy we got to hold him. Everybody was crying. It was a moment. It was just breathtaking.”

Niko was whisked to the neonatal intensive care where he was hooked up to oxygen and heart monitors and had “seven medications going through him,” McEvilly said.

On day two, Niko had heart surgery to redirect his blood flow, McEvilly said. One day three, Niko received a gastrostomy tube, also known as a G-tube. A hole in Niko’s heart was another issue but it closed by itself, McEvilly said.

“Because God works through Niko,” McEvilly said.

But after two weeks in the NICU, McEvilly said doctors told them Niko’s organs were failing, that it was time to say “good-bye,” McEvilly said. McEvilly said she and Abel prayed over their son, asking for a sign that Niko wanted to live.

That’s when Niko moved his foot for the first time.

Eventually, Niko took some breaths on his own. Then Niko came off the ventilator. His medications were reduced from seven to four.

Finally the 5-week-old Niko went home – with a heart monitor, a pulse oximeter, a G-tube and his four medications. Niko had his cleft lip and palate repaired at age 1, but he still requires the G-tube for round-the-clock nourishment, although he does drink chocolate milk and water out of a cup.

At age 2, Niko had cranial vault remodeling, a nine-hour surgery “because his brain fused too soon” in Niko’s development, she said. Niko sees a cardiologist every three to six months for an echocardiogram and EKG due to his enlarged aorta. He has severe scoliosis.

Because one eye didn’t develop correctly, Niko’s parents must decide if Niko should have surgery to repair it or to replace that eye with a false one. McEvilly said she wants Niko to look in the mirror and “be happy with himself,” especially now that he’s 6 years old and other kids do notice the eye, she said.

“It’s been extremely hard for us to find an eye doctor for him,” McEvilly said.

Niko doesn’t walk or talk – he needs extra speech and physical therapy, but his family can’t afford it - and his immune system is compromised, McEvilly said.

But Niko likes music and being a part of activities. He’s doing well in school, likes the swings and loves his specially built bike, McEvilly said.

He can take off his own socks and hold his cup, McEvilly said.

“He knows how to stack things,” McEvilly said.

Niko does have a partial deletion of chromosome 21 and, from McEvilly’s understanding of the rare disorder, “only seven kids in the whole world had this deletion and all passed away in one month of living,” she said.

“Except for Niko,” McEvilly said.