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LEWISTON, Cache County — At only 10 months old, Tony Nielson’s heart has been through more than most have in a lifetime.
Just 24 hours after Tony was born, his parents learned their son had five heart defects, according to Tony’s mother, Maquel Nielson.
“He spent the first three months of his life in heart failure,” Maquel Nielson said. “He got really really weak and he had to have a feeding tube put in and it was awful.”
Tony underwent his first open heart surgery in September, and he was doing well for a few months — until what the doctors thought was pneumonia turned out to be heart failure, Nielson said.
Rather than waiting five or six years for Tony’s mitral valve replacement, the baby is scheduled for another surgery April 22. And as surgeries often do, it comes with risks.
Heart valves aren’t constructed small enough for babies, and although it may be possible to install a mechanical heart valve, it comes with a high risk of stroke, meaning Tony would be on blood thinners his entire life. The mechanical valve wouldn’t grow with Tony, so he’d be forced to face open heart surgery every four to five years until he is fully grown, Nielson said.
The Nielson family hopes to travel to Boston Children’s Hospital for a new surgery that would allow doctors to install a valve that would grow with him, delaying another open heart surgery until he is older, Nielson said.
“The benefits of that outweigh the risks of having the mechanical valve,” Nielson said. “The risk with the new surgery is it’s only been done on around 30 kids ever, and so they don’t really know the long-term effects of it, but so far they’re having really good success with it.”
Because the surgery is so new, it is waiting for FDA approval, Nielson said.
Nielson has had the chance to speak with a few parents of children who have received the surgery, and said they have been a huge support to their family.
Baby Tony’s constant fight has given him a nickname — Baby Iron Man.
“We named him Tony before we even knew he had a heart defect, and then one of the doctors pointed out later that Iron Man, Tony Stark, has something implanted in his heart to keep the shrapnel in his chest from killing him,” Nielson said. “So he had a special team of people working on his heart to keep him healthy and so Tony also has a special team of people working on his heart to keep him healthy.”
Nielson added Tony is “kind of a superhero” and “super handsome.”
Nielson’s friend Lana McKee pointed out that Baby Iron Man doesn’t have the small fortune Tony Stark used to pay for his experimental devices, so she is helping with a fundraiser to benefit baby Tony’s medical costs.
On Friday, the Tony Tough fundraiser will take place at the American West Heritage Center, where attendees will be treated to a Dutch oven dinner, a hay ride and a silent auction.
The silent auction will include “amazing, huge items” like a mattress and box springs from Utah Mattress and nine yards of concrete donated by Jack B. Parson Companies, McKee said.
McKee expressed appreciation for the event sponsors and the community.
It's been a new experience to be on this side of the charity and to see how it feels to have people gather around you when you're in need.
–Maquel Nielson
"We've already seen so much good come out of it already, I mean, the community has really, honestly, they've come together and people have been so willing and so generous to help and do whatever they can."
Currently, the Nielson family is waiting on their insurance to let them know whether it will cover the surgery or not. The surgery could cost between $100,000 and $200,000 without insurance, Nielson said.
Nielson is excited to see the support for her family at the Tony Tough fundraiser.
“It’s been a new experience to be on this side of the charity and to see how it feels to have people gather around you when you’re in need,” Nielson said. “Half the people helping I don’t even know and have never met us or Tony, and it’s special.”
To buy tickets for the fundraiser, reserve them here. Dinner tickets will be sold for 6, 7 and 8 p.m. Tickets for the event cost $20.
If you can’t make it to the fundraiser or if you’d like to donate* to the Tony Tough fundraiser, an account has been set up with Lewiston State Bank. To donate, click here.
*KSL.com has not verified the accuracy of the information provided with respect to the account nor does KSL.com assure that the monies deposited to the account will be applied for the benefit of the persons named as beneficiaries. If you are considering a deposit to the account you should consult your own advisors and otherwise proceed at your own risk.
