After running out of options in Ontario, an Elmira resident is preparing to have life-changing surgery in Arizona later this year.
Kennedy Shannon, now 20, was born with a condition called pectus excavatum, meaning her chest wall is caved in. As a child in elementary school, she was bullied by her peers.
“In the change room is where I got the most bullying because, obviously, I didn’t look like everyone else. And that was really hard to go through as a kid. I got really anxious, and I still suffer a lot of anxiety. I’ve just become very insecure about it,” she said.
Kennedy’s mother, Lori, said at first the condition did not seem like a big deal because it did not impact her physically.
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“Yes, to look at her, she looked different. But she could still run and do all the other things as a young child. She would get winded a little bit sooner than everybody else, but it wasn’t until, in her teens when she really started to have problems,” Lori said.
These issues include a rapid heart rate, stabbing chest pains, feeling like she is having a heart attack and decreased lung capacity.
Kennedy’s condition is so severe that her lungs and heart are compressed and operate at 40 per cent capacity. Her right ventricle is completely compressed, and has to work 35 per cent harder. Her heart currently sits on top of her stomach.
Kennedy explained the issues were really pronounced when she was in gym class.
“I couldn’t keep up with anyone. It was getting really tired, really easy. And then I got an Apple watch for my 17th birthday to track my heart rate and I realized that it was going a lot higher than normal. And that’s why I was feeling really faint and felt really just overall really crappy, very dizzy and lightheaded… and I was like ‘OK, something’s definitely not right,’” she said.
As a third-year student at the University of Waterloo, she can even experience an elevated heart rate of up to 190 BPM on the 15-minute walk to one of her classes.
Over the last five to six years, Lori and her husband have attempted to have the issues solved in Ontario, including visiting the ER, seeing cardiologists, pediatricians, several physicians, and meeting with two thoracic surgeons in Toronto. However, the doctors all claimed that her pectus excavatum was not the cause and that it is only a cosmetic issue.
“So when I asked them what is causing Kennedy’s heart issues and her lung issues, they can’t answer that for me, because they don’t know. When your chest is caved in, it only makes sense that it’s restricting your heart and your lungs because that’s where they are. So we got frustrated dealing with it here,” Lori said.
“It was extremely frustrating because I knew something was wrong. And it wasn’t going to stop advocating until I got my answer. I knew I wasn’t crazy, but being told basically, it was all in my head doesn’t feel too nice coming from a specialist opinion,” Kennedy explained.
Following a CT scan, one surgeon in Toronto confirmed that her pectus excavatum is the cause of her heart and lung issues.
The surgery that Kennedy requires will involve inserting three or four metal bars in her chest. The most a surgeon in Canada has done is two.
Turning to other solutions, last June Kennedy visited the Mayo Clinic in Phoenix, where she finally felt acknowledged by the thoracic surgeon.
“The very first thing she said to Kennedy is ‘I bet you feel crazy, because everybody has told you that…your pectus has nothing to do with your conditions,’ and Kennedy said ‘exactly.’ And she says ‘Let me tell you, you are not crazy. You are 100 per cent normal. I believe you and I trust you and I’m going to fix you.’ She was so reassuring. Both Kennedy and I had tears in our eyes,” Lori said
While there was some relief, there is also a question of how to pay for the procedure. The total cost of the surgery, hospital stay, post-op appointment and travel expenses will run between US$50,000 and $100,000. While OHIP would cover the surgery if it was performed in Ontario, it will not provide any coverage for the surgery in Arizona.
“We’ve been fighting with OHIP and then the Ministry of Health since August to get it paid….I have zero confidence right now like a lot of people in our health system. But when you have a child who is basically saying, ‘Mom, I can’t live like this,’ that’s a problem. I don’t know what else to do for her other than pay the money.”
A Ministry of Health spokesperson stated that while the ministry does not direct patient care, “Ontario experts have advised the standard of care for pectus excavatum in Ontario is the placement of two bars as there is very limited clinical evidence to support the use of three or more bars.”
Lori has set up a GoFundMe page to raise funds while others in the community have stepped forward to help. Frannie’s Restaurant & Bakery in Breslau will be selling pies throughout February as a fundraiser for Kennedy.
Following the surgery the metal bars will remain for four years to reform her ribcage. Kennedy is looking forward to being more active.
“Hiking is probably one of the things. My boyfriend’s really adventurous, so he always wanted to go on hikes and tours. I’m excited to actually be able to do that. Maybe even be able to play a couple sports, maybe down the road. I don’t know, I’ll see but I always wanted to do that as a teenager and I never got to so I can see myself doing that down the road,” she said.
“I’m extremely excited to get back to a normal life or even start a normal life to begin with because I haven’t had one my whole childhood.”