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Brisbane make-up artist and law student Ksenia Borodin celebrates every day like it’s her last.
The fun-loving 21-year-old from Tarragindi was not expected to survive beyond the age of two, having been born with multiple heart defects.
“I have been sick my whole life,” she said. “I had to leave high school halfway through Year 10 due to major surgery. I was dying and had to have my colon removed.
“I returned to study in 2019 and was accepted to study law at university.
“My family and I try to live as normal a life as possible, but every single day could be my last.
“Basically, I’m dying.”
One in 150 Australians is born with congenital heart disease every year and Miss Borodin is hoping to shine a spotlight on people like herself through World Heart Day on September 29.
Miss Borodin was born with a hole in the wall between her heart's upper chambers as well as an abnormal connection between the lower chambers and an inability to produce normal blood flow through the heart.
She suffers pulmonary hypertension which causes shortness of breath and she often turns blue from low oxygen levels.
Her condition was not detected in the routine scans and monitoring during her mother’s pregnancy and it was only when her parents became concerned that she wasn’t eating or walking that they took her to a GP when she was 18 months old.
“I was then referred to a cardiologist,” Miss Borodin said. “As a kid, I was always quite petite. My growth was impacted by my condition and I failed to thrive.
“Doctors told my parents I would be dead by the age of two as the heart operation they needed to perform only had an estimated 30 per cent success rate. My parents took the risk when I was 19 months old, and I’m incredibly grateful I’m still here today.”
While advances in medicine and cardiac care have improved outcomes for people born with heart conditions over the past 20 years, nearly one-fifth of all cases are not expected to survive.
Those who do live often experience complications and, Miss Borodin’s case, may require a heart and lung transplant.
“When I was a baby, a band was put on my pulmonary artery, but it has become too tight as I’ve grown and is now restricting blood flow to my lungs,” she said.
“My doctors are considering a possible heart and lung transplant.”
Mater provides care for about 650 patients with congenital heart disease every year.
Adult Cardiology Clinical Nurse Consultant Wendy Senior said survival rates for people with congenital heart disease had improved dramatically over time with most patients now reaching adulthood.
“Adult Congenital Heart Disease (ACHD) affects people aged 16 and over who are living with a heart defect acquired during foetal development,” she said.
“For the first time adults living with CHD outnumber children with the disease, meaning we must now look beyond childhood and consider whole of life care.
“Patients with CHD require care that is lifelong, holistic and both person and family-centred.”
While other 20-somethings are living life to the full, Miss Borodin is unable to swim, exercise or talk for long periods of time.
Simple pleasures, such as being a bridesmaid at her friend’s wedding, become a test of Miss Borodin’s courage and commitment to live.
“I was rushed to Emergency at Brisbane’s Mater Hospital because one of the medications I was on injured my lungs and doctors had to drain about 1.5L of fluid just days before the wedding,” she said.
“I was supposed to be doing everyone’s hair and make-up for the wedding – including the bride’s - and I had to organise a hens’ day at a spa.
“I just knew I had to pull through and I did. It was a lovely achievement.”
Ms Senior said Mater’s multidisciplinary team saw it as a priority to treat Miss Borodin “the person” not just her condition.
“We worked hard to manage her treatment around her commitments for the wedding which was incredibly important to her,” Ms Senior said.
For World Heart Day, Miss Borodin is calling for greater tolerance and acceptance to people with congenital heart disease.
“Because the disease is invisible, people don’t realise how debilitating it really is,” she said.
“I’ve been verbally abused for using a disabled car park, and stared at for entering a disabled bathroom because no one can see the giant scar I have from the middle of the back to my armpit from surgery.
“I’m hoping by raising awareness about congenital heart disease, people will become more understanding and tolerant of the impacts it has on our daily lives.”
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