Kira Iaconetti, 20, has had a lot of performances in her life, but the most nerve-racking wasn’t for an audience at Benaroya Hall or for her fellow community members in Lynden.
Iaconetti’s scariest performance was for an audience of fewer than 10 people — all of them medical professionals there to remove her brain tumor. On an operating table with several inches of her brain exposed, Iaconetti sang to a room of doctors, nurses, and anesthesiologists. Their goal? For Iaconetti to come out of surgery able to sing.
“I don’t like singing in front of small groups of people. Unless I’m on stage, I can’t do it,” Iaconetti says.
She’s almost two years out from her awake craniotomy, and although the road to recovery has been filled with traffic, she’s pretty much back to being the bright, energetic person she was before the tumor.
Iaconetti’s passion for music started early. She was only six years old when she began acting in musicals.
“It just kind of stuck. I don’t have an ‘Ah’ moment where I was like, ‘Oh, this is what I want to do for my life.’ I just always loved it so much,” she says.
The roles started getting bigger and better and Iaconetti continued with community theater into high school.
It was then she started to notice something in her body was off-kilter.
“I would start hearing a really high-pitched ringing and my vision wouldn’t process in my head,” Iaconetti says. Her body started to go numb and her singing would falter and lose tone. “When I got my first big, big lead on stage, I didn’t want it to ever happen. That’d be really embarrassing.”
The breaking point, she says, was when she started to experience an uncharacteristic amount of paranoia. She would be driving and feel absolutely convinced that she was about to crash her car. Walking down the street at night, she felt certain she was about to be kidnapped.
Iaconetti told her mother, and after a visit to a regional neurologist they went to Seattle Children’s Hospital. Iaconetti was diagnosed with musicogenic epilepsy, a special kind of epilepsy triggered by listening to or performing music. She was facing the possibility that she could never sing in tune again.
“It was a cruel, sick joke,” Iaconetti said in an interview with Seattle Children’s Hospital.
Three weeks and one MRI later, Iaconetti underwent a craniotomy to extract a marble-sized tumor from her right temporal lobe, which controls auditory and visual processing.
Dr. Jason Hauptman, a neurosurgeon on Iaconetti’s surgical team, didn’t want to risk causing damage to her brain that would render her unable to sing, so he came to her with a bold idea: to wake Iaconetti up during the surgery and have her sing. If her voice faltered or her speech slurred, they would know they were close to damaging her temporal lobe.
“The day came and it was pretty daunting and pretty creepy. Everything was freaky. Everyone else was crying and scared and I was like, ‘Okay. Here we go,’” Iaconetti says.
She was almost more nervous to sing in front of her medical team than she was to undergo brain surgery.
“The most comforting part was that everyone that told me that they had gotten surgery before said, ‘You’re going to count down from a certain number, go to sleep, wake up, and you’ll be done. It’s all good.’” Iaconetti says.
Iaconetti says she remembers almost everything from when they woke her up. “They told me I wasn’t going to remember it or be really aware, and I was, so it was cool,” she says.
As soon as she woke up in the operating room, Dr. Hauptman told her, “Kira, your brain is beautiful!”
“Can you see it?” she asked.
“I’m looking right at it,” Hauptman replied.
While the medical team carefully carved away at her tumor, Iaconetti sang Weezer’s “Island in the Sun.” Eventually, everyone in the room was singing along.
“The only time I ever felt any pain, they immediately took care of it when I said something. They were really careful about that,” Iaconetti says.
The surgery was successful. Just 48 hours after her surgery, Iaconetti sat upright in her hospital bed and played “Island in the Sun” on her guitar, surrounded by friends and family.
Recovery was a long, hard road. Iaconetti was bedridden and bored for more than two months. She says she wouldn’t have been able to do it without her support system — her family, church, and friends.
“I got taken care of, which was really nice,” she says.
Now, she’s able to function with almost no side effects.
“They did scoop out like a tablespoon of my brain, so as much as I want to say I’m completely normal, my memory is not super great and I’m a little less coordinated, but it’s not a big enough deal that I’m worried about it,” Iaconetti says.
Since the surgery, Iaconetti has been in the news and on television all over the world. She was flown out to “The Today Show” along with her parents and Dr. Hauptman, was featured in Teen Vogue, and has done several interviews with medical publications.
Iaconetti also had the opportunity to co-write an original song with composer Mateo Messina and perform it for a fundraiser for the Seattle Children’s Hospital. She stood barefoot in front of a crowd of almost two thousand people and sang, “There’s so much ahead of me, my clock just slowly ticks.”
Iaconetti doesn’t like being asked what her plans are for the future, she says she finds it overwhelming. At least for now, she’s auditioning for some short films and applying to work as an actor in Vancouver, British Columbia.
“Just kind of… adventuring.”
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