Ben Spinney had his heart set on being the next American Ninja Warrior. And as a 21-year-old with what amounts to half of a heart, his story won him a spot on the popular obstacle-course competition series.
But, in a cruel twist, his congenital heart defect is also what derailed his plans just days before the Vancouver man and his parents were set to fly to Los Angeles.
While watching “American Ninja Warrior” about a year and a half ago, Ben made it his mission to get on the show. His cardiologist gave him the OK, and Ben sent in his audition tape.
He found out a few weeks ago that he was selected for the show, and the family planned to fly to California on Sunday. He was scheduled for filmed interviews today and to take his first shot at the obstacle course on Tuesday. Ben’s parents, Roxanne and Jerry Spinney, had custom T-shirts reading “Half Heart Ninja” made for the trip.
But last Thursday, Ben received heartbreaking news. Liability issues related to his heart condition came up as Ben was signing the final legal documents and, ultimately, he had to withdraw from the show.
“It sucked,” Ben said.
Ben hoped to inspire people with his story, to show them that a heart condition doesn’t mean a person can’t live an active life. He still hopes to do that, though, his story won’t be shared on a national stage.
“To anyone with a heart condition: Don’t stop trying,” Ben said. “Like I tell my friends, don’t tell me what I can’t do, because I’ll prove them wrong really quick.”
Beating the odds
Ben was never given much of a chance.
When he was just 1 day old, Ben had a seizure. Tests revealed he had a rare heart defect that occurs in about one out of every 5,000 births. Roxanne asked the pediatrician what that meant for her son’s future.
“I asked him, ‘Can he survive?’ ” Roxanne said. “And he said, ‘No,’ and walked away.”
The family, then living in northern Michigan, reached out to the University of Michigan’s C.S. Mott Children’s Hospital, which had a congenital heart program that offered surgical treatment for Ben’s condition, called hypoplastic left heart syndrome. Ben was transported via helicopter to the children’s hospital in Ann Arbor, Mich. There, he was stabilized and underwent surgery when he was 5 days old.
Hypoplastic left heart syndrome is a heart defect that affects the normal blood flow through the heart. In children with the defect, the left side of the heart does not develop properly while the baby is in the mother’s womb, according to the Centers for Disease Control and Prevention.
“Basically, the left side of his heart didn’t form before he was born,” Roxanne said. “It’s like having half a heart.”
Typically, the left side of the heart pumps oxygen-rich blood to the body and the right side pumps oxygen-poor blood from the heart to the lungs. With an underdeveloped left side, it’s difficult for oxygen-rich blood to get to the rest of the body, according to the CDC.
Adjusting goals
The surgical treatment is performed in three steps and rebuilds the right side of the heart. Essentially, Ben said, the right side of his heart is functioning as a whole heart.
After the first surgery at 5 days old, Ben underwent surgery when he was 4 months old. Complications following the second surgery led to a third, unexpected procedure a few days later. Ben then underwent his fourth open-heart surgery when he was 2 years old and was placed on blood-thinning medication.
Ben has had a relatively normal life since then, though, his heart condition has limited him.
By middle school, Ben was having difficulty keeping up in gym class and was excused from the class for the remainder of his schooling. He was also prohibited from playing contact sports.
“All of my friends were off playing football and basketball and joining teams,” he said. “I couldn’t do any of it.”
Ben long had a dream of joining the Navy, like his dad, and then becoming a firefighter. Initially, he was told a heart condition wouldn’t preclude him from joining the military. But Ben later learned that wasn’t the case.
“No branch of the military would take me,” he said. “No fire department would take me.”
So, Ben adjusted his goals.
He graduated from Mountain View High School in 2014 and is now enrolled in the phlebotomy program at Clark College. He also works as a cashier at Fred Meyer.
Ben started working out at a local gym and watching “American Ninja Warrior” a few years ago. The show motivated him to hit the gym more frequently and, before long, Ben was convinced he could complete the obstacles on the course.
‘Let him live’
Roxanne wasn’t thrilled with the idea. She has always been anxious about her son overdoing it, and she refuses to go to the gym with him. But she reluctantly gave her blessing after thinking back to advice Ben’s cardiologist gave her two decades ago.
“The cardiologist pulled me aside and said, ‘We’re doing this to give him a life. You have to let him live,’ ” Roxanne said. “I’ve had to remember that many times. I have to let Ben live.”
That’s why the family was so excited to share Ben’s story with the country through “American Ninja Warrior.” Ben wanted to show other parents of kids with heart conditions that they’ll be OK, that their heart condition doesn’t have to hold them back.
And Roxanne was ready to let her son spread that message.
“For all those people out there with kids with a heart condition, this is an inspiring thing,” Roxanne said. “And I have to let Ben be inspiring.”
