Fifteen surgeries by the age of four

Shannon’s congenital heart condition has meant numerous operations, however, a positive outlook and the support of her family ensure she’s living her best life.

Shannon is only 24 years old, and she has lived with a congenital heart defect for her entire life.

“It’s my normal,” she says. “My family didn’t tell me much about it when I was younger, only that something was wrong with my heart, and I had to limit myself more than others.”

It was only once Shannon was older and studied her condition in greater detail, that she learned she was born with a number of heart defects including holes in her heart (ventricular septal defect and atrial septal defect), no pulmonary valve (pulmonary atresia), and a narrowing of her pulmonary artery and aortic valve (pulmonary artery stenosis and aortic valve stenosis).

Despite this, she is incredibly upbeat and positive about the journey she has already been on.

“In parts it’s good because I know more about health than if I didn’t have a heart condition,” she says. “I wouldn’t have known any of this.”

Multiple operations in pre-school years

Shannon underwent 15 operations before the age of four to repair her heart, and the need for surgery will be ongoing.

“I had some surgeries to fix the holes in my upper and lower chambers,” she remembers. “Also, with my pulmonary artery tear I got a donor’s valve put in but that one is leaking at the moment. My aortic and pulmonary valves are leaking so I’ve got to get those fixed sometime soon.

“Some days I’m all happy and good, but there are those days when I’m just a bit off, wondering if my heart will keep going.”

She manages to lead a normal life, for the most part, only having to stay away from caffeine when it comes to diet. Though exercise has been a problem growing up.

“Whenever we played sports at school or were running at lunchtime I couldn’t keep up with the other kids. I could do everything but at my own pace.”

Ongoing symptoms have impact on day-to-day life

Shannon doesn’t currently have to follow any strict regimens or treatments, though she has been getting medical advice regarding palpitations.

“They have been talking about putting me on some medication to stop my palpitations because I would get palpitations every day, nearly ten times a day,” she says. “But they want to keep me off it for as long as they can.”

Shannon also gets breathless more easily because her condition means her heart has to work a lot harder to pump blood between the heart and lungs and around the rest of her body.

“What it really means is that I breathe harder and faster than most people and run out of breath quicker.”

Building peer support

Naturally, Shannon has had a lot of questions for her doctors over the years, but her main concern is talking with peers and others who have been in her shoes. After struggling to find anyone, she has decided to act for herself, and is setting up a support group for younger people with congenital heart conditions

“The most difficult thing is not having people around me with the same condition to talk to about it – you feel alone growing up,” she admits. “With the new support group that I’m building I’m trying to bring it all together for everyone because support is vital.

“My family is also a great source of support, and I’m glad that I can talk to them about everything and anything.”

Tips for others

In terms of advice for others living with a heart condition, Shannon has some pretty amazing tips.

“I would say looking up the condition is important. I studied it for years just so I knew what could happen and now I know what has happened,” she says. “So just having that knowledge is powerful and helps a lot.

“I would also say don’t worry about the future, worry about the present. Never worry about what’s going to happen tomorrow just worry about what’s happening at the moment and just don’t give up. It all gets better.”

 

Shared June 2022

 

Learn more about Shannon's support group
Please note: the views and opinions of the storyteller and related comments may not necessarily reflect those of the Heart Foundation NZ.

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