BALTIMORE (WJZ) — A profound new technology used to lengthen limbs is being perfected at a Baltimore hospital, improving the life of one little boy who just wants to run without pain.
Nikolai Tomayo was born with one leg inches shorter than the other. His parents saw the birth defect at 22 weeks in their ultrasound.
“We decided to continue, and if there were issues like they were saying, we would have to deal with it and it was the best decision of our lives,” Carla Luis, Niko’s mom, said.
Only one in every 50,000 kids has what Niko has — a congenital femoral deficiency.
At just nine-years-old, he’s had five major surgeries to make his shorter leg longer. For months, he had screws and a knob sticking out of the side of his thigh.
“It was harder on him and on us to see those pins sticking out of your son’s leg,” Luis said.
“I don’t remember the feeling, but I remember seeing it,” Niko said.
The piece was used to stretch Niko’s bone, but the open wounds were painful and would get infected.
Niko said he could still do all the things his friends could do, but playing would tire him out.
“If I run for too long, it hurts and I get tired,” Niko said. “I just want to sit down.”
As a kid who loves basketball and riding his bike, he muscled through something he never saw as a disability.
“I have photos of him in Disney running with his exterior fixator and we were like ‘how does he do it?’ He has a strength that I don’t know how to describe,” Luis said.
On September 15, the game changed for Niko and his family.
“He went to surgery, came out, and he doesn’t have anything to worry about,” Marcos Tomayo, Niko’s dad, said.
Niko used to have an apparatus on the outside of his body. Now, all he has is a small plate.
A Precice plate was screwed to Niko’s bone, and using a magnetic machine, his mom and dad can slowly lengthen Niko’s leg from home — a fraction at a time, four times a day.
“Today it felt really amazing, not just because of the machine, but with everything that goes with it and I don’t know how to describe it- just happiness,” Luis said.
Most limb-lengthening operations start out with the external fixator. Niko had pins going from inside his leg to a Precice rod for roughly six months and he spent many more months in a cast.
The Precice rod is another form of technology used to lengthen limbs. A metal rod is screwed into the bone and a small cut is made. As the rod is stretched, bone fills into the open space, making the bone longer, lengthening the limb.
The rod is so effective that 500 people from all over the world have already had this operation at Sinai Hospital over the last eight years, but many children’s bones are too small for the rod.
So Niko is blazing the trail of the Precice plate, which screws to the side of the bone and pulls it apart from the outside using a machine with a strong magnet.
“It’s so wonderful to see progress in the field. New iterations and I’m just grateful to the engineers that came up with this,” Dr. John Herzenberg said.
Now, strapped with the latest and greatest, Niko is willing to go the distance.
“I’m gonna run and run and run and run and run and run,” Niko said.
Dr. Herzenberg helped develop the new technology and performed Niko’s surgery. He’s one of the first patients in the country to experience this new device.
“Just to have the privilege of helping a family, helping a child. That’s what it’s all about,” Dr. Herzenberg said.
The plate will stay in Niko’s leg for about a year, stretching it just a little longer every day. Niko will still need more operations in the future, but at least for now, he can get back to being a kid.
“The limit? You put all the limit here. He’s the same as other kids, it depends on how you look at him, but he can do anything,” Niko’s dad Markos said.
And his mom and dad can quite literally watch him grow.
“I love them,” Niko said.
“He’s our little champion,” Luis said.