Taking heart to beat the stigma

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"Some people think it’s a sign of defeat. I find my scar a sense of victory." Young people with heart disease speak up on the hurt of misconceptions. Abbey Thorpe reports.

Phoebe Patterson says a scar on her chest and malformed ear, an abnormality in some cases among people born with a heart disease that affects over 65,000 Australians, influences the way she is regarded.

The 20-year-old says that these physical features are part of the reason that she was seen differently. “I’ve always grown up with the stigma of I’ve been different (as) I have always been noticeably physically different,” she says.

Congenital heart disease (CHD), which refers to a heart disease that is present at birth, is the most common congenital disorder with up to 3000 newborns in Australia diagnosed every year.

Phoebe has transposition of the great arteries, where the aorta is connected to the right ventricle, and the pulmonary artery is connected to the left ventricle, the opposite of a normal heart’s anatomy.

Phoebe also has a ventricular septal defect which is a hole in the wall separating the two lower chambers of the heart.

She says that other children were puzzled by her appearance. “I didn’t comprehend it myself, I was like I’ve got a cool scar on my chest.”

“Young kids are quite brutal,” Phoebe says, “It was noticeable the number of days I had off due to my heart, and when school is your whole life kids notice that kind of thing.”

Like Phoebe, 18-year-old Shanise Bosmans was born with transposition of the great arteries, three ventricular septal defects and one atrial septal defect, a hole in the wall that separates the top two chambers of the heart.

Shanise says that she was picked on because of her scars, particularly a small deep scar above her belly button from a drainage tube after surgery.

However, she says, “I just let it go because I know that I would not be alive if I didn’t have these scars.”

Phoebe says that she felt particularly isolated when it came to sport. “I was not the go to person to throw the ball to and I remember always being picked last.”

Her school didn’t always understand her heart condition, “Sometimes, particularly in sport I need more time and I don’t think people realised that,” she says.

She says she was treated as one of two extremes during school sports. “You are treated in two different categories, that you’ll be fine or you are marshmellowed by those around you.”

Shanise says she was looked down on by her peers as she didn’t participate in sport as much as they did, however “I just shrugged it off because they have no idea what it feels like to live in a body that has limits.”

Twenty-year-old Imogen Downing was diagnosed with pulmonary valve stenosis at one week old, her pulmonary valve was very thick and narrow and couldn’t pump blood to her lungs.

She had open heart surgery at 17 months old, the pulmonary valve was removed completely and she has been living without it for most of her life.

Because of her condition Imogen gets tired easily, especially while exercising as her heart is working twice as fast.

She says this would often make people think that she was lazy or unfit during school sports, “when in fact I was trying as hard as I could.”

Imogen frequently felt left out during sporting events and she was often told that she was being too fragile, “people would question why I had to take a break or come off the field for being too tired.”

“I couldn’t exercise for too long because I felt like I was going to faint, and I had some people telling me it was just an excuse, it wasn’t a mentality thing, it was a health thing, I knew my body’s limits.”

Despite her condition and the stigma that she faced, Imogen still played touch football and played hockey for five years which defied people’s expectations of her, “a lot of kids with CHD can’t really play sport and my cardiologist was amazed that I was doing what I did.”

“It’s hard to say we shouldn’t always be treated different, when sometimes we have to be” Phoebe says. “It’s not normal to go have surgery, have check-ups every  six months and monitor yourself.”

To erase the stigma around congenital heart disease Phoebe says people should “understand that we have our own limits.”

Shanise says that the way to end the stigma is through education, “many people when they think of heart conditions either think of overweight middle-aged adults who have had heart attacks or sick babies who are ‘cured’ after surgery.”

There are however thousands of teenagers and young adults with heart conditions in Australia “the truth is that surgery is not a cure and these childhood heart diseases and defects exist for life.”

Shanise says these assumptions are even present in the medical world “presenting at an Emergency Department a lot of people are dubious, how can a teenager have heart problems?” and that “Most of the time the only way to overcome this is to advocate for yourself.”

Nineteen year-old Elly Regan has Pentalogy of Fallot, which is comprised of a ventricular septal defect, right ventricular outflow tract narrowing or complete obstruction, right ventricular hypertrophy, overriding aorta and atrial septal defect.

Elly also says that there is a need for education, “heart disease isn’t just an old person’s disease, there are so many people with congenital and childhood heart diseases that are my age.”

Imogen says that the best way to erase the stigma is to “treat me like they would anyone else, to not feel as if I’m too fragile to do things but also know that I have my limits, just as anyone else does.”

She says that while “some people think it’s a sign of defeat, I find my scar a sense of victory, I’m happy to say that I’m quite proud of my scar.”

Imogen is not afraid to share her story with others “people shouldn’t be afraid to ask if they notice my scar, others may not feel this way but I love to share my story, to raise some awareness.”

Phoebe along with many others with congenital heart disease has been given a number of opportunities, through HeartKids, an Australian organisation dedicated to supporting people affected by CHD.

She is a member of the HearKids Youth Advisor Committee and is a group leader at the HeartKids National Teen Camp and says, they “have truly been the best experiences of my life.”

https://www.heartkids.org.au/