Thirteen-year-old Echuca resident Chelsea Hard wants to help others understand what it is like to live with a rare heart condition.By Ruth Clayton
Having a rare heart defect is not something Chelsea Hard finds easy to explain.
Even among her group of friends, it is difficult for the 13-year-old Echuca resident to fully convey the enormity of her condition.
There are operations, medications, three-monthly visits to the Royal Children’s Hospital in Melbourne and physical and emotional implications to her heart condition.
She has missed periods of school over the years and has to take it easy with physical exercise.
At a glance, however, it would be easy to pass Chelsea off as a regular teenager.
She enjoys listening to her favourite music, One Direction, Ed Sheeran and Little Mix and is also an avid reader.
Many people see a girl with no obvious physical impairments, but that is a common misconception Chelsea and her mum Tracey want to change.
‘‘Just because some of these kids look fine doesn’t mean there’s not something wrong,’’ Tracey said.
That ‘something wrong’ was discovered when Chelsea developed a bad chest infection as a baby.
When doctors delved deeper into the problem, they discovered a heart murmur.
Doctors sent her to Melbourne to have tests and, at 18 months, Chelsea was diagnosed with ‘congenitally corrected transposition of the great arteries’.
The condition means the chamber in her heart which sends blood to her body and the chamber which sends blood to the lungs are reversed.
The right ventricle, which is weaker than the left, has the harder job of pumping blood to the entire body.
It is not a hereditary illness and neither her older or younger brother nor her parents have heart conditions.
It is still a mystery why Chelsea was born with CCTGA.
Things got more complicated in the years after the diagnosis, when she was also diagnosed with other heart conditions
For example, until doctors can pinpoint the cause of her heart arrhythmia, they cannot undertake an operation to switch her heart ventricles, called the ‘double switch’ operation.
In 2007, doctors discovered heart conduction problems, where they were concerned about the time it took for blood to flow from the top of the heart to the bottom.
In 2009, at nine years old, Chelsea had open heart surgery to place a band in her heart to prepare it to cope with the double switch operation.
She has also had many other operations to have cardiac catheters inserted, spending at least one or two nights in hospital each visit.
Chelsea is currently on a waiting list for another catheter to try and discover the cause of the arrhythmia, so she can finally have the double switch operation.
‘‘I’m hoping once they’ve done the big switch, I might not have to have many more (operations),’’ Chelsea said.
Not an unreasonable request from someone who would have spent more time in hospital than anyone else she knows.
‘‘Honestly, I don’t think I’ll ever get used to it (being in hospital),’’ Chelsea said.
‘‘It’s not terrible, but it’s not fantastic either.’’
Chelsea’s heart condition also has had wider implications on her family, who credits support networks, such as HeartKids Victoria for helping them cope.
Support networks help organise accommodation for families of heart patients and run a morning tea at the hospital every Thursday for HeartKids patients.
HeartKids also arranges camps for heart patients.
‘‘It (the condition) effects everybody, from us to the grandparents, to aunts and uncles, to who’s looking after the kids, the dog and the cat,’’ Tracey said.
‘‘We don’t plan a lot of things. We take each day as it comes.’’
But Tracey said it was also easy to put Chelsea’s condition into perspective.
‘‘Seeing other people in Melbourne (at the hospital), there’s always someone worse off than us,’’ she said.
‘‘We’re grateful (and) deal with it the best we know how to.’’
Tracey has since learnt to cope with Chelsea’s diagnosis, but initially it was difficult.
‘‘Once the shock settled down
‘‘You want to get out there and raise money for research as to why these things happen.’’
Chelsea faces a future of further operations, medication and will most likely have a pacemaker fitted at some stage.
She knows no-one will ever truly understand her life unless they have been through it themselves, which is sometimes frustrating for her.
‘‘(People should) take into consideration that not everyone is perfect and some people have to work through things that are really hard,’’ Chelsea said.
Nevertheless Chelsea looks forward to the future and plans to help people with heart conditions by becoming a HeartKids camp co-ordinator and mentor.
‘‘I want to be one of those people who says, ‘I have a heart condition but I still am doing what I want to do’,’’ she said.
‘‘I’m not going to let anyone stop me from doing what I want to do.’’
HeartKids is a support group for families of children with congenital or acquired heart disease.
It also donates money, equipment and research grants to children’s hospitals.
Chelsea has helped organise a barbecue at Bunnings on Saturday, February 16, from 9am to 4pm.
There will be donation boxes at Echuca NAB, Two Tarts Juice Bar and Numanz Embroidery for the whole month of February and a colouring competition for kids and a HeartKids smoothie at Two Tarts to raise awareness of the cause.
People are also able to donate by writing a cheque to Heart Kids Victoria and dropping it off at Echuca NAB.
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