Kira Iaconetti is remarkable in many ways. Not only is she a talented musician at age 19, but she also recently had brain surgery to treat a rare form of epilepsy.
Iaconetti has been a singer for most of her life. She dreamed of making a big break, but she was troubled by one problem — seizures that started whenever she heard music or sang. For an aspiring musician, it was a devastating problem.
“It just [felt] like a light switch switches in my brain and suddenly I’m tone deaf. I can’t sing. I can’t process the words in time with the music,” Iaconetti said.
She started noticing a problem during high school.
The problem started four years ago. Eventually, it became clear that something was seriously wrong. When she sang, she would start to slur her words and become incomprehensible.
It must be a terrifying experience for someone who loves music so much. Thankfully, Iaconetti wasn’t alone.
She went back to her former neurologist to get another opinion.
Her doctors decided to perform an MRI to see what the problem was and why it was getting so bad. Their tests confirmed that Iaconetti did have epilepsy. Hers is a rare form of the disease called musicogenic epilepsy. But that wasn’t the only issue. The MRI also found a small benign brain tumor.
“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,” said Dr. Jason Hauptmann, one of Iaconetti’s neurosurgeons. “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.”
The doctors made an unusual plan to heal her brain and save her voice.
Iaconetti was admitted to Seattle Children’s Hospital for surgery. Their plan was to do an awake craniotomy. This was exactly what it sounded like — Iaconetti would undergo surgery, under anesthesia but awake. The reason? She needed to sing, so her doctors knew their work was successful.
“In a sort of twisted joke from the universe the tumor was right inside the area of my brain that controls my hearing and singing ability,” Iaconetti said. “Messing with it 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. He didn’t want to interfere with my ability to sing.”
Although her surgeons had performed awake craniotomies before, they had never performed a surgery to save someone’s musical ability. While Iaconetti sang in the operating theater, the doctors stimulated her brain to see how it affected her performance.
The operating theater became a musical theater.
It isn’t often that you hear someone singing in an operating theater. While doctors helped Iaconetti, she touched them with her music and her beautiful voice. But her song choice also had an element of humor. Her performance piece? Weezer’s “Island in the Sun.”
The song choice has a lot of personal meaning for Iaconetti. But it also includes the line, “I can’t control my brain.” It was a perfect choice for her mid-surgery performance. A video shows her surgeons even doing a little dance as they operate.
The complexity of the surgery also meant that a musical expert needed to be present.
David Knott, a musical therapist, stood alongside the surgeons during Iaconetti’s surgery. He listened carefully to her as she sang and noted anytime there was a problem. This helped doctors adjust what they were doing.
Not even brain surgery can keep her from the music she loves.
Now, Iaconetti is in recovery and already singing again. She is thrilled to be back on her feet. What’s more, she can prepare for a long and happy career doing what she loves.
Hauptmann also thinks Iaconetti has a happy life ahead of her.
“I anticipate a happy, healthy future as well as an in illustrious musical career,” he said. “I am in awe of her bravery and hope her story can give other young patients strength in the face of adversity.”
There is a bright future ahead of her.
Iaconetti says she is interested in pursuing acting more in the future. Her YouTube channel is full of videos of past musical theater performances. Her voice is a strong, full soprano, and she even plays guitar — including in her hospital bed two days after her surgery. Knott was impressed by her resilience and her vocal abilities. He played along with her in her hospital room on a ukulele.
Although Iaconetti thinks she has a long way to go, her doctors are amazed at her progress. It’s not only her beautiful singing voice that affected them — it’s also her relentless positivity.
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