FIXING A BROKEN HEART

IT’S finally happened – your beautiful child has arrived and you’re a family. You’ve created life. There is no more wondrous feeling on earth.

Then, within minutes, or an hour, a week or months, you hear one of the worst things you’ll ever hear – your child is diagnosed with heart disease.
You’d swap positions in an instant.
Then, when the day you have steeled yourself for — and gently spoken to your child about — arrives it is a huge ordeal.
Our little Sabrina was aged five when the time came for her to be operated on at the Royal Children’s Hospital.
She underwent pre-admissions, a whole day of tests, blood samples, angiograms, paperwork.
Our family were planned, ready, as emotionally stable as we could be.
To have that surgery cancelled is harrowing. We were lucky — we were only cancelled twice.
The first time, we’d arranged for family to come from interstate, as we also had a six-month-old breastfeeding.
Then we were told, no, it’s another date. So, we went through it all again. Then the call — it’s cancelled again.
You’re in a spin.
Your child is turning blue more often, becoming listless, deteriorating before your eyes. Help my child, you plead.
Every day, many parents go through this trauma. Yet we are fortunate to live in Victoria, which has one of the world’s best children’s hospitals, the RCH, an expert in cardiology.
But the hospital can’t fully cope.
It operates within a system under enormous strain, where the surgeons and nurses give 100 per cent every day and still can’t keep up with demand.
One in 100 babies in Australia is born with a heart condition. That’s more than 2000 “heartkids” a year.
Half need surgery or medication.
Heart disease is the largest killer of our children aged under five, accounting for 30 per cent of deaths.
More kids die of heart disease than all the other childhood diseases combined.
For one of the country’s most serious conditions, it has among the lowest awareness out in the population — and among our politicians and bureaucrats.
As the population rises, cardiac surgery at the RCH has increased 20 per cent in the past five years, but this has not been matched by extra funding.
Because the RCH is the centre of excellence for cardiac care, patients are sent from across our nation for surgery.
Due to the complexity of heart treatment, patients need long stays and multiple surgeries — some up to a three-month stay with three surgeries.
In 2001, 140 patients came from interstate. Last year it had risen to 260.
Yet Victoria gets no special assistance from either the Federal Government or other states to account for this.
The shortage is a highly complex problem, which can get bogged down in rhetoric, political promises, blame and excuses of the wider problems of the hospital system.
So, what is the best fix?
For starters, Australia needs a comprehensive plan for paediatric cardiac care, involving other states and the Rudd Government.
At the RCH, extra funding should immediately be allocated for at least 10 more open Intensive Care Unit beds, and ICU-trained nurses to go with them. That means six extra nurses per bed, 60 in all.
As cardiac patients account for half of the patients in the ICU, there must be dedicated ICU beds for them.
At present there are none. How can half the daily users not be allocated a definite number of beds and the ICU be expected to run efficiently?
If we are to have more ICU nurses available, the State Government should fund ICU training rather than making the nurses pay the $13,000 themselves. Most must also drop from working full-time to part-time for two years to be able to study, a massive salary drop.
As an ICU specialist they start on only $7500 more ($63,589) than a nurse with six years’ experience, hardly a sufficient financial incentive to make all the study, training and lost salary worthwhile.
The incentive must be there, simply by giving ICU nurses the pay rates that properly recognise their expertise.
The responsibility would be less onerous with extra nurses, which would also translate to improved shift hours and a fairer workload.
The plans for the new RCH need to be reviewed now, after the Auditor-General reported the new Womens’ Hospital failed by 20 per cent to match the bed ratio to projected population growth.
Now is the time, before the new RCH is completed, to determine whether it is adequate for the state’s — and nation’s — growing cardiac requirements.
Proper planning and funding, for medical staff and facilities, is the key right now to prevent families from having to endure future cancellations.
After all, Victoria would like to think it can maintain world’s best practice in looking after our children.
Surgery is not scheduled at random.
Making sure it happens when planned ensures it is performed at the optimal time for each patient and guarantees cardiology staff can adequately plan.
It would also ensure that the cardiology area’s needs weren’t adversely affecting other RCH patients.
Heart disease kills four kids a week.
It is up to the Victorian Government and the Federal Government to work out their funding formula, to truly end their “blame game”.
Heart disease is heart breaking enough for any family, without having to endure the trauma of multiple cancellations of action to fix it.
Scott Reinke