Lincoln Niece runs around his family’s living room, playing with whatever toys he can get his hands on. That’s his life these days: trucks and trains. Star Wars and Snoopy. Even video games on the Xbox with his dad.

He’s got boundless energy, and there’s no slowing down the blond-haired, hazel-eyed 2½ year old.

This is normal life for Lincoln. And normal life, well, that’s pretty remarkable. See, Lincoln needed life-saving medicine just to make it through the first days of his life.

Lincoln was born with five defects in his heart. Blood wasn’t getting to his lungs – his oxygen levels were at 51 percent. The medicine was just a temporary measure to help.

Five-day-old Lincoln? Well, he needed a closed heart procedure for a shunt to be placed, helping his oxygen levels improve. Three open heart surgeries followed during the next two years.

So normalcy these days is quite the feat. It’s been quite the journey.

Receiving the diagnosis

Ron and Whitney Niece of Greenfield were eagerly anticipating the arrival of their first child. The couple didn’t have any indication there were concerns. Sure, at the anatomy scan, the bottom chamber of Lincoln’s heart wasn’t found, but it was found a few ultrasounds later.

Even when he was born – “blue as a Smurf,” his mom said – Ron and Whitney didn’t know what was right and what might be a concern. This was their first child, after all.

But overnight, there were more concerns. Then at Lincoln’s routine 24-hour newborn screening, well, that screening took six hours. Doctors diagnosed him with Tetralogy of Fallot with Pulmonary Atresia.

“The first couple days, people would call and ask, ‘What’s going on with Lincoln?’” Whitney said. “We couldn’t even say Tetralogy of Fallot. We couldn’t pronounce it. We would just say there are four defects in his heart and go from there.”

At 26 hours old, Lincoln was Lifelined to Riley at IU Health. He was placed in the NICU and given a form of prostaglandin, the medicine that allowed oxygen to circulate through his heart. Medicine that kept him alive.

It was an emotional roller coaster for Ron and Whitney in those first hours.

“It was the joys of holding your firstborn son and being at the pinnacle of excitement to down at the very bottom not knowing if he was going to be around the next day,” Ron said.

Lincoln spent the next four days in the NICU at Riley. The Nieces later learned from Dr. Robert Darragh, a cardiologist at Riley, that Lincoln actually had five defects in his heart.    

When the Nieces met with heart surgeon Dr. Mark Rodefeld, they received reassurance from the doctor. Whitney recalled Dr. Rodefeld had a simple message for them:

“It will be OK. We will get him fixed.”

Fixing Lincoln’s heart

Lincoln’s first surgery was a temporary measure – Dr. Rodefeld made an incision in Lincoln’s back, went through the ribs and put in a shunt to open blood flow to the lungs.

The Nieces went home with Lincoln five days later and waited to see how long before Lincoln would grow out of the shunt. They also waited for his first open heart surgery, one that would fix the defects in his heart.

At six-months old, Lincoln received the go-ahead for surgery, which was set for Oct. 6. That day, Lincoln underwent a 9-hour long surgery. Dr. Rodefeld repaired two holes in his heart and made a valve out of Lincoln’s own tissue to help the heart function like it should.

In the next months, Lincoln had a handful of heart catheterizations to make small adjustments as he grew. But in that time, there was good news: he was beginning to be the rambunctious little kid that he is now, showing signs of good health.

But the journey had a couple setbacks. During a family vacation to Mexico in October 2015, Lincoln had trouble breathing. When the Nieces returned home, Dr. Darragh determined that the valve in the first surgery had become leaky and needed to be replaced.

On Nov. 2, 2015, Dr. Rodefeld placed a bovine valve in Lincoln’s heart. It was his second open heart surgery. The third one followed in August 2016 after a balloon procedure to open a pulmonary artery didn’t stick.

“That’s the journey that is,” Whitney said.

Giving back

Ron and Whitney Niece have made it a habit of giving back. It was part of their lives before Lincoln was born, but now it has become a more personal motivation to help other families going through similar journeys.

Whitney is one of the coordinators for Mended Little Hearts of Indianapolis, an organization that provides support to families with children that have congenital heart defects.

Meanwhile, Ron, an avid video gamer, organizes an annual 24-hour video game marathon fundraising event to support Riley through the Children’s Miracle Network. They started the fundraiser before Lincoln was born and now just have more motivation to keep it going.

In four years, Ron’s Extra Life fundraising event has raised nearly $4,000.

“With Lincoln, it’s more personal. Before, if someone had a story about Riley, we couldn’t really relate to it,” Ron said. 

And Lincoln’s “normal life” now – even if it’s going crazy in a living room with his boundless energy and abundance of toys – is reason for Ron and Whitney to pause and reflect on the blessing of his life.

“That’s our motivation – the kids that don’t necessarily get to come home and have the normal life that Lincoln gets to lead,” Whitney said.

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