The Voice’s Nick Hagelin and Wife Discuss Son’s Rare Condition in Exclusive Interview
April 18, 2016
While you may have followed Nick Hagelin through his journey this season on The Voice—you may not have heard the one story he is most eager to tell.
After his winning audition, the judges asked Nick to bring his family up on stage. His wife Christina Hagelin brought their little boy, Bash, to stand beside him and the crowd exploded with applause. Clearly Nick had a reason to fight and win.
“Bash was born with a disease called Arthrogryposis Multiplex Congenita. Sometimes called AMC,” explained Nick. “It’s pretty rare—about 1 in 3,000 birth.”
Though Bash immediately looked like most newborns, doctors quickly saw some abnormalities.
“We had no idea during the pregnancy,” says Nick. “In retrospect there were things that made sense. He wasn’t moving a lot. He was always sort of lopsided in her belly. He wasn’t flipping around easily.”
“He was born with a club foot, his shoulders were all hunched up to his ears—we couldn’t see the definitions of his elbows in his arms.”
Nick’s wife, Christina, didn’t let her anxiety show.
“I was so stressed out after the labor but I remember telling Nick “he’s fine. Everything is going to be fine.”
The hospital wasn’t able to pinpoint any diagnosis, except to call him “abnormal” and it would be another nine days before his parents could get him in to see an orthopedic surgeon.
It was then that they finally got the diagnosis.
The doctor who diagnosed him gave off a very “doom and gloom” expression to the young couple.
“What you see is what you get,” he told them. “And he’s never going to get better.”
He said it was a genetic condition, it wasn’t going to change, and gave the new parents information on a their options.
“He told us about this kind of an archaic surgery for his condition where you lock one arm up for feeding and one down for toiletries,” recalls Nicks.
“They wanted us to crank his arms to stretch and give them motion and it wasn’t working, it was just hurting him.”
However, they did start working on physical therapies five days a week to get Bash the most mobility as possible.
After measuring Bash’s day-to-day progress for some time, it was clear that the sessions alone weren’t delivering enough results. It was at this point that the Hagelins decided it was time for them to start broadening their search for a better solution.
“We basically just started a wide range of treatment from what the doctors were recommending to alternative therapies to everything in between.”
They took Bash to see an osteopath, a chiropractor, an acupuncturist and finally a cranialsacral therapist with whom they had great success.
They started doing regular sessions with a therapist named Rebecca Flowers from the Upledger Institute.
“His sessions showed incredible results,” said Christina. “His tendons were like icicles that transformed to butter.”
Still, Bash would have to deal with multiple upper body surgeries on things like his elbows and bone surgeries on his wrist.
Nick and Christina are happy to report that at 5-years-old Bash is considered super functional, able to feed himself, play on his iPad, write, read and play with toys.
He still has undeveloped deltoids and biceps that they hope will mature over time.
A Lucky Break
Despite the rare condition, Nick still considers them lucky. The severity of Bash’s condition is not as bad as it has been seen in other patients.
“The bones are relatively unaffected. Thankfully this is a soft-tissue condition. While he still has hand contractions (similar to what you would see in children with cerebral palsy) we know that the skeletal integrity beneath all of that is fine.”
Some children with this condition are born with displaced hips, sometimes the contractions are so hard that they ultimately affect the spine. We’re relieved that his condition is “distal” which means it won’t affect the spine or the face. Most importantly to the couple though is the fact that despite his challenges, for the most part, Bash is not in pain.
You can also continue to follow Bash’s incredible story on his website here.
Nick and family are considering coming to this year’s Global Genes Rare Tribute to Champions of Hope Gala.
Sign up for updates straight to your inbox.