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rare heart surgery gives teenage girl her life and future back
7 minute read
maria's takeaway from her lifesaving surgery is that life is short, and she intends to use her time to hang out with those she loves most and pursue a career that helps others who have diseases affecting the heart.
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maria was a typical teenager, hanging out with her friends, working at superstore and planning her future, when one day everything changed. a few days after new year’s, just after she started her final year of high school, maria fainted out of nowhere while standing in line at the bank.
“i told my mom, ‘hey, i have a headache,’ and then seconds later, just fainted,” she said.
she was taken to south lake hospital in newmarket, ontario, where she received an electrocardiogram (ecg), a test that detects abnormal electrical activity in the heart. when the results came back fine, maria was sent home.
at the time, she was experiencing some symptoms, such as being lightheaded after her shift, but notes that it wasn’t as significant as it would later become. her family doctor wanted a more in-depth look at what might be going on in her heart, and she was given a holter monitor test, which is worn over the course of a few days to weeks to gain better insight into potential heart rhythm issues.
“sometimes i would have normal heart rhythms, and sometimes it’d be like terrible heart rhythms,” she said of the results. “they didn’t see the terrible ones (in the first test) because it was an ecg. it’s 10 seconds. it’s hard to properly identify.”
her resting heart rate and blood pressure were also incredibly low at 48 and 80/50, respectively.
going through the motions to get to a diagnosis
she was sent to toronto general hospital because of the results from her holter and her symptoms of dizziness, light-headedness and fainting spells. they put her on a beta blocker to slow down the more erratic heart rhythms, which only made her feel worse.
she notes that she applauds her doctor for using that because, with the information that they had at the time, her heart rate sped up far too fast—she just had a really bad arrhythmia. but they didn’t have the whole picture, and when everything, including her heart rate and blood pressure, dropped, the beta blocker wasn’t the ideal treatment.
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around easter of that year, she fainted again while on the beta-blocker. she ended up having to take time off school or leave early because she would get so lightheaded, and friends around her noticed her skin turning dangerously pale. she was tired all the time, felt sluggish and felt like her chest was “overworked.” a few days after her birthday in may, she got the diagnosis.
“it’s because i had a tumour in there,” she said. “i knew that something was up. i had an uneasy feeling and made some comments to my mom previous to being diagnosis, where i was like, ‘look, i feel like something’s in there. i feel like something’s off.’ i kind of knew that there was something.”
coping with an array of emotions
after being diagnosed with her heart tumour, maria cycled through various emotions. at first, she wasn’t shocked, because her intuition told her something was up, and she knew her body well enough to sense that some news—whatever it may be—was about to come.
“it was sort of like a validation of sorts because you had that feeling,” she said.
however, hearing the word ‘tumour’ in a diagnosis can evoke a range of emotions, some of which can be unexpected.
“i was kind of like laughing at the time. it sounds really bad, but i don’t react to things well, and then i went with my family, and i panicked a little because i saw (it) … big mass in your heart,” she said. “so, you’re going to panic a little, but then i went to the hospital and i calmed down a bit.”
during that time, maria also had to contend with missing out on certain things because of her tumour, things that she watched through the eyes of her friends.
she was then sent to uhn’s peter munk cardiac centre because she had to have surgery on her heart to remove the tumour.
“i knew i was being admitted for that purpose, so it just kind of felt relaxing,” she said. “because at least they’re not just like, ‘oh, we’ll keep it in you.’ they wanted to take it out, so i think that was more assuring, if that makes sense. plus, i had really good doctors like dr. cusimano.”
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“it was a lot to process and deal with because i am pretty young to be dealing with all that. for example, while i was coming out of the icu, it was my school’s prom, so there was a lot going on at the time, all of my friends, they were getting ready for prom, prepping for that, getting promposals and i was getting blood work,” she said.
she notes that she was lucky to have her friends and family there to support her, though many called and visited to check on her throughout the entire process.
meeting with the doctor who could remove the tumour
dr. robert cusimano, who is one of only two cardiac surgeons in the world who can perform the rare surgery that maria needed, had spent his professional life learning all there is to know about the heart and complex surgeries.
maria notes that she was “an annoying patient” with millions of questions and health anxiety, but having dr. cusimano on her care team made the ordeal much easier to deal with.
they connected over their shared italian ancestry, and dr. cusimano had such “good bedside manner” that she felt reassured the entire time.
“they always took their time,” she said. “they made you feel better and then you went in for the surgery.”
when it was time for dr. cusimano to go into the operating room to remove maria’s tumour, he mentioned that he “felt confident” in being able to help her, but with complex surgery and a young woman’s life at stake, the experience wasn’t completely without fear.
“operating on anyone, especially a young woman at the beginning of her adult life, is stressful. no two cardiac tumours are alike. performing an operation for a major tumour like hers is thus unique and each operation has never really be done before,” he said in an email to healthing. “one enters the operating room with principles and hopes that those principles are sound and will get one through. thankfully, those principles did not let me down.”
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dr. cusimano opened up maria’s chest and removed the mass with such precision that he was able to “preserve all of the vital structures and valves of her heart.” when all was said and done, maria’s heart had a few sutures, but the tumour itself was gone.
he had expected a more complex surgery, due to the size of the tumour, but when it ended up being easier than he had planned, he could breathe a little easier.
“not all of our operations are successful, especially in a transplant centre and one dealing with large tumours of the heart. i am always happy when a person with a bleak future does so well,” he said.
he also notes that, as a parent himself, the stakes often feel higher in the operating room because he can empathize with the emotions maria’s parents are going through. he also tries to “emotionally become part of the family” of his patients so that he knows when he’s in that surgery, it’s his family on the table, and there’s no other option but to try his hardest to succeed.
knowing that he was able to help maria, leaving her with only a scar on her chest, “brings great satisfaction, strength and courage to keep going, to keep pushing boundaries and keep looking for ways to help more people.”
“i was as happy as if my own daughter had come through with such good results,” he said.
looking forward to tomorrow after heart surgery
after the surgery, maria spent about a week in the hospital recovering, but she was pleasantly surprised by how quickly the process went, considering she had “open heart surgery.”
“i thought, ‘okay, i’m going to be bedridden or something,” she said.
but after about a month to two months following her operation, her life was slowly getting back to normal. she was going out with her friends, dealing with the follow-ups, and planning for a future that may have been uncertain if not for the surgery.
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she’s now taking a year off from her studies, living a relatively everyday life, hanging out with the ones she cares for most, working full-time and doing cardio rehab so that when she goes back, she’ll be ready to take on the curriculum.
before the surgery, she had chosen a career path, but her experience led her to change all that. she is now going into cardiac perfusion so that she can dedicate her life to helping people like her.
“it’s actually changed my life a lot,” she said about the experience. “i wouldn’t really go out as much. i would just stay in my room and study the whole time, but now i’m realizing, ‘okay, life is short. you should go out, hang out with people more, you know?’”
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