Kira Iaconetti’s passion is singing and performing on stage. The self-taught musician, 19, spent her entire young life performing in plays and musicals until about four years ago, when she started having a strange reaction any time she sang or listened to music.
“It was like a light switch turned off in my brain,” Iaconetti said in an interview for Seattle Children’s Hospital. “Suddenly, I was tone deaf, I couldn’t process the words in time with the music and I couldn’t sing.”
Iaconetti would have these two-minute “episodes,” and then return to normal — although strangely exhausted. Still, she didn’t worry about the occurrences until their frequency increased.
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“Forcing myself to sing after one of these glitches was extremely difficult,” she said. “I would become incoherent, slurring and stuttering my words.”
Iaconetti and her mom went to Seattle Children’s Hospital, where a neurologist told her that the episodes were a type of seizure that only occurred when her brain was exposed to music. An MRI showed that there was a calcified tumor that pushed up against her auditory cortex, causing the seizures, “in sort of a twisted joke from the universe,” she said.
“Her tumor was discovered because of a very unusual type of epilepsy she had called musicogenic epilepsy,” Dr. Jason Hauptman, a neurosurgeon at the hospital, explained. “These seizures are triggered by listening to music or singing, which is an unfortunate problem for Kira since she is a performer who likes to sing.”
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Working with Iaconetti and his fellow doctors, Hauptman formulated a surgery plan that would allow them to remove the tumor while hopefully preserving the teen’s ability to sing and process musical notes.
“Messing with [the tumor] could permanently affect my voice, and because Dr. Hauptman knew how important it is to me to continue singing and acting, he wanted to be very careful when removing the tumor,” she said. “He didn’t want to interfere with my ability to sing.”
Hauptman decided on an awake craniotomy, meaning he would go into Iaconetti’s brain while she was under anesthesia, and then wake her to sing, igniting the areas of the brain that work when she’s using her musical abilities.
“Our focus was not only on taking care of the tumor, but making her life better. We wanted to preserve the things she cares about, like her passion for pursuing a career in musical theater,” he said.
Having a patient wake up and sing was a first for the Seattle Children’s surgeons.
“We’ve never had a patient sing in the operating room before, and Kira is such a talented musician,” neuropsychologist Dr. Hillary Shurtleff said. “Her voice is so beautiful and her willingness to do something new helped make the whole process interactive, collaborative and exciting.”
The Sept. 4 surgery went smoothly, with Iaconetti testing out her singing as doctors mapped out her brain. Then, Hauptman worked on removing the tumor as she sang Weezer’s “Island in the Sun,” which she picked because it made her think of her family and Hawaii, where she was born. Plus, one of the lines goes, “I can’t control my brain,” to which she added, “literally.”
Doctors put her back to sleep after that and finished up the surgery, and Iaconetti was back to singing and playing guitar 48 hours later from her hospital bed.
Hauptman said that Iaconetti likely won’t require any additional surgery.
“Kira is a remarkable young lady who had a terrible problem,” he said. “We came together and developed a very novel way to approach her problem that we’re hoping will have a positive impact for the rest of her life.”
And Iaconetti is ready for her next show.
“My biggest fear before the surgery was that the seizures would get in the way of performing,” she said. “Now, I want to get back to the stage, to performing as soon as I can.”
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