Surgery Cancellations at Royal Children’s Hospital
Each week, six Australian children are born with heart problems requiring operations to save them or give them a chance to actively take part in life.
Between them, (clockwise from top left) Chrysoula Petras, Kevin Innes, Makayla Tyrrell (on his lap), Brodie Guy, Lincoln Catlin and Julian Michielin have had 19 operations cancelled since June.
More than 400 children are on waiting lists for cardiac surgery in Victoria, with one angry mum saying “it’s just not good enough”.
Up to 60 operations were cancelled at the Royal Children’s Hospital last month because there is nowhere for them to recover.
The hospital has some of the world’s best heart surgeons ready and waiting to treat the young patients.
But the lack of intensive-care beds means the operations cannot proceed, prompting families to demand the State Government immediately fund 10 additional beds and recruit and train enough nurses to operate them.
After turning blue and being rushed to hospital on Sunday night, eight-month-old Lincoln was upgraded and booked for a major operation this morning.
With surgery already cancelled six times this month, his mother Penny Brunton was not surprised when the hospital called last night to tell her it was off again.
“We have the best surgeons you can get and they just can’t do what they are supposed to be doing,” she said.
Last Friday, all cardiac surgery was called off.
Last month, a 10-day-old boy with breathing problems became the first child in 14 years to be sent interstate because all of the state’s pediatric intensive care beds were full.
The Royal Children’s Hospital has 17 intensive care beds that must be supervised 24 hours a day by specially trained nurses.
But emergency cases have forced scheduled operations to be cancelled, especially on cardiac patients, who account for 45 per cent of intensive care occupants.
The hospital’s chief of surgery Dr Leo Donnan said the problem was finding intensive care nurses to staff beds.
“Urgent and emergency cases are having to take precedence on our elective,” he said.
“We are trying to milk every ounce out of this system at the moment to ensure there is no one left behind and there is no child at risk.”
The number of complex heart patients being sent to the Royal Children’s from interstate has increased 80 per cent since 2001.
The Australian Medical Association believes Victoria needs another seven pediatric intensive care beds – costing $1 million a year each – and wants another eight neonatal intensive care beds, costing $1.5 million a year.
HeartKids Victoria president Scott Reinke said 10 ICU beds needed to be reserved for cardiac patients.
“It is not about waiting for the new hospital. It is past critical point now,” he said.
“We need at least 10 more ICU beds immediately, with trained nurses.”
In a June email leaked to Opposition health spokeswoman Helen Shardey, the Department of Human Services asked Victorian hospitals to treat children in adult intensive care beds, ignoring established policies.
“Following discussions with the Royal Children’s Hospital and Monash Medical Centre, we have been asked to convey to CEOs the significant pressure that PICU services are experiencing,” the memo states.
“As such, your health service may be asked to care for a patient under 16 years of age in your adult intensive care unit.”
Health Minister Daniel Andrews’ spokesman, Jason Frenkel, said the RCH’s intensive care unit treated 1400 children a year, with one in five coming from interstate.
“With an international shortage of pediatric ICU nurses, there are sometimes limits on the number of ICU beds that can be safely opened,” he said.
“However, the Brumby Government has significantly increased the state’s neonatal and pediatric ICU capacity from 52 beds in 2000 to 72 beds in 2008.
“We are building a brand new $1 billion state-of-the-art children’s hospital with the capacity to treat an extra 35,000 patients every year.
“There will be an extra 21 ICU beds at the new Royal Children’s Hospital.”
How to Assist
HeartKids knows that cancellation of surgery causes distress to children and families, and the huge difficulty in re-scheduling your life to work around rescheduled operations (especially for country families and the increasing number of interstate families that come to the RCH). HeartKids also has concerns about the medical impact of these cancellations.
As a result of this level of surgery cancellations, HeartKids has written to the State Government Ministers, State Opposition, Department of Human Services and the RCH.
HeartKids will be working on this matter actively. We believe this is an important matter for meeting today’s requirements, but also is a serious issue in relation to the new RCH.
We encourage Heartkids families to prepare themselves for the fact that they may be facing surgery cancellations, and possibly many times. If you find yourself in this position, please don’t hesitate to contact us for any assistance or advice we may be able to provide. Additionally, we recommend that members that do find themselves in this position write to their local State Member as well as the following Ministers:
The Hon Nicola Roxon Federal Minister for Health and Ageing
MG 50
Parliament House
Canberra ACT 2600
email:
Hon John Brumby, Premier, Level 1, 1 Treasury Place, East Melbourne VIC 3002
Hon Daniel Andrews, Minister for Health, Level 22, 50 Lonsdale Street, Melbourne VIC 3000
Maxine Morand, Minister for Children & Early Childhood Development, Level 1, 2 Treasury Place, East Melbourne VIC 3002
Mr Ted Baillieu, Office of the Leader of the Opposition, Parliament House, Spring Street, East Melbourne VIC 3002
Helen Shardey, Shadow Health Minister, Suite 1/193 Balaclava Road, Caulfield North VIC 3161
Wendy Lovell, Shadow Minister Children & Early Childhood Development, 138 Welsford Street, Shepparton VIC 3630
If you would like to add your support to this issue, we encourage you to write to these Ministers.
HeartKid of the Month
Makayla’s mother discovered something was amiss with her pregnancy during her 20 week ultra sound which showed her child had a major heart defect. Whilst she was given options to terminate the pregnancy she chose to keep her baby. On 9 December 2007 the world welcomed Makayla.
Within 2 hours she was transferred to the Royal Children’s Hospital in Melbourne where it was confirmed she had a multitude of heart defects which included; Transposition of the Great Arteries, Double Inlet Left Ventricle, Ventricular Septal Defect and Hyperplastic Right Heart Syndrome.
The ensuing months have been somewhat challenging for Makayla and her family, with a series of operations and constant trips to the hospital. She is currently booked in for her fourth operation and has another planned at around 5 years of age, things are looking positive for this beautiful girl.
Her mother Lauren reports she has been most appreciative of the support offered to her and her family by HeartKids. “These have been most challenging times, but we take each day as it comes. Everyone has to keep smiling as Makayla never stops smiling. We are lucky that we have a happy baby.” says Lauren.
LATEST NEWS
Young Makayla has been in the news in recent weeks due to the repeated cancellation of her surgery. This has been due to a lack of ICU beds and trained nurses. See article on ‘Surgery Cancellations’ for the full story.
Please support Makayla and the many thousands of other children like her.
Heather Round - HeartKids SA Mum named Mother of the Year
MOTHER-of-six Heather Round not only looks after her own children but also helps the families of children with congenital heart disease.
Mrs Round, 35, was named Barnardos’ Australian Mother of the Year.
In 2002, she lost her son Max, a twin to Henry, 5, to Hypoplastic Left Heart Syndrome when he was just 13 days old. Children with the disease typically have to be treated in Melbourne. Mrs Round decided to set up an accommodation support network, Max’s Place, to support families facing the financial burden of living for up to six months in Melbourne. “We would have loved to be able to cure congenital heart failure in kids but, because we can’t do that, we thought we would help the families,” she said.
“She’s Wonderwoman,” Mr Round said. Tim said Heather was a devoted mother. “Her life is about our kids and everything else is second to that,” he said. She was nominated by her mother Judith Parkinson who said Heather always had put others first. “I think she’s great and she probably should spend more time on herself, but the kids always come first,” Mrs Parkinson said.
Max’s Place
Max’s place are a group of three units that Heather & Tim Round have purchased in dedication to the memory of their son Max – these units are for the use of families that have to relocate to Melbourne for life giving surgery for CHD children. Max’s Place is a one bedroom apartment, with a kitchen, living and bathroom, which is located directly opposite the Royal Children’s Hospital.
The apartments are located in the Royal Park Towers and has a security entrance. They also have car parking spaces for the families staying in the apartments to use.
http://www.heartsofhope.iinet.net.au/homepage/max.html
I am dying but I want to help HeartKids - with latest update
Tiffin was born with an asd and Congenital heart block. It was fixed at the age of 4 with a pacemaker. Tiffin then enjoyed a normal life. She played sports, did swimming all lived like other children. However when she was 13 she complained
of a stomach ache and after many tests doctors discovered she had contracted cardiomyopathy, which had severely compromised her heart.
She has known for a long while that she would need a transplant, but with a rare blood type and with so many risks attached to heart transplants she lives in limbo and is continually in and out of hospital.This is really draining for her and making her feel really ill.
However rather than become introverted and disillusioned, Tiff recently contacted the CEO of HeartKids to see if she could do something with her remaining life to assist others like her and to hopefully raise funds for research to ensure less children are born or acquire heart disease and that mortality rates improve.
Tiff with HeartKids CEO Neil McWhannell
If you want to help Tiff achieve her goal please visit the donation section in the website.
Channel Seven’s Simon Reeve has been one of the first to offer his support – dedicating his recent African Adventure to Tiff’s tenacity and strength to overcome adversity.
RECENT UPDATE
Readers will be delighted to learn that, with her health rapidly detriorating and after a series of minor heart attacks, Tiff received a call that an almost perfectly matched heart was available for transplant. Was this karma for someone wanting to help others? After a full day’s surgery and 10 days in hospital, Tiff has a whole new life in front of her. Tiff reports all is progressing extremely well with her body accepting the new organ as well as could be expected. She says it is like having a V8 in her chest. She has so much more energy and for the first time in her life she is able to contemplate a normal life. Tiff is even now looking for a job and would welcome a call from anyone looking for an intelligent vibrant girl with a really positive outlook on life. Please call HeartKids Australia if interested in meeting Tiff.
Tiff just four days after her heart transplant.
Busking to the Beat
HeartKids is running a new school program called ‘Busking To The Beat’. Our aim is to raise awareness of the high incedence of Childhood Heart Disease (CHD) as well as raising much needed funds. Will you join us in the fun?
Click here for more information.
Read all about Kids Heart Research DNA Bank
Kids Heart Research DNA Bank. An initiative to help understand the cause of congenital heart disease.
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
Pasta Master Sponsorship Launch
HeartKids Australia is delighted to acknowledge and the outstanding support of the Pasta Master Group – owned by Andrew Douglass. Andrew’s own life has been affected by this dreadful disease with his daughter Matisse undergoing a heart transplant in her early life. Rather than dwell on this, Andrew and his company led by Chris Szlachetko have sought to assist HeartKids in order to do something about this. As the first major foundation sponsor of HeartKids Australia, Pasta Master will always hold a special place in our history.
It has been as a direct result of their support that our organisation has been able to develop a national office and quickly develop as a charity that will make a real and tangible difference to what we believe is Australia’s most significant children’s health issue.
Zippa Day - Pasta Master Launch
St Jude Medical supporting HeartKids
The donation by St Jude Medical has come about through a pledge to make a financial donation for every Heart Valve implanted in Australian hospitals for the past three months. This donation will assist HeartKids Australia to build capacity, fund research and raise awareness for their plight. Along with awareness, the donation will be used to fund a number of exciting research projects. These projects include:
• Working on the Genetic Causes of Childhood Heart Disease.
• Minimising risks associated with Open Heart Surgery.
• Assisting in Rural and Remote areas where there is a disproportionate number of children with Heart Disease, often resulting from Rheumatic fever.
The 3 month project has been so successful St Jude announced a further 3 months of operation of the most generous offer.
HeartKids CEO Neil McWhannell with St Jude CEO Geoff Stevens
Manchester Unity announced as Primary Foundation sponsor
At the AGM Dr O’Reilly announced that HeartKids had been selected as its sole recipient of its philanthropic support for the next 5 years. Dr O’Reilly said HeartKids had been selected because of the significant need to address children’s heart disease.
This launch was followed by another at the Grand Conference of the Manchester Unity Friendly Societies. This conference which included Oddfellow Lodges from around the country warmly received news of the partnership with many of them expressing a desire to also assist HeartKids with its work. Whilst the majority of this money will be directed to support Research, some will also be allocated to the various State Groups to support their Family Support Coordinator positions.
Pictured is Manchester Unity CEO John Brogden, HKA CEO Neil McWhannell, Daniel and Karen Sherlock and Dr Bill O’Reilly
Neil McWhannell and Dr Bill O’Reilly
Karen Sherlock giving her moving address on how the Manchester Unity donation will help HeartKids children and families whilst Daniel waits patiently for the cheque!
HeartKids Australia welcomes its foundation CEO
I am delighted to announce that Neil McWhannell JP has been appointed as the founding Chief Executive Officer of HeartKids Australia.
Neil impressed HeartKids throughout a rigorous recruitment and interview process with his candour and enthusiasm, a highly engaging manner with excellent presentation skills, and broad experiences equipping him to lend great momentum to the tasks at hand for those who care about Childhood Heart Disease.
Originally coming from an educational background where he was CEO/Principal at some of Australasia’s leading independent schools, Neil then moved into the not for profit sector where he has spent the last 5 years, four of them as CEO of the YMCA of Sydney.
Neil has a real passion for serving the community being a member of Sydney Rotary and the current Chairman of the NSW Division of the Duke of Edinburgh Award. Neil is also a senior Rugby Referee in New South Wales. He is married with two children in their twenties.
Neil possesses a wide and diverse range of skills and experiences in Senior Management and Executive roles. He is a member of the Fundraising Institute of Australia and has also served on a number of Boards and Foundations.
HeartKids Australia is looking forward to the benefits of Neil’s leadership and passion. He advised us through his interviews that he places a high priority on working closely with all members of the Heartkids family to fulfil our vision. You can expect to see him in the near future as he moves to establish himself and gain a full understanding of current HeartKids operations.
I am sure you will all join with me in congratulating Neil and wishing him well for the exciting challenges ahead.
Dr Dominic Frawley
Chairman
HeartKids Australia
HeartKids Events
HeartKids runs numerous events in each State. These include Zippa Day, HeartKids Week, Family Camps, Teen Camps, Morning Teas, Fundraising Balls on so on.
Please contact your HeartKids State Organisation for further details on upcoming events.
Heart Felt Desserts
Heart Felt Desserts Fundraiser Awareness campaign
Throughout May 2008 some of Sydney’s leading restaurants are participating in the “Heart Felt Desserts” campaign to raise funds for HeartKids. These generous restaurants will be asking their pastry chefs to design a dessert for HeartKids. $2.00 from the proceeds of every sale will go back to HeartKids to support our programmes. See HKNSW website for further details
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HeartKids newsletters
The following are recent State newsletters.
HeartKids Vic Summer 2008
HeartKids_Vic_N-L_Summer_2007-2008.pdf
HeartKids NSW News – Spring 2007
HEA404-HeartkidsNews_Spring.pdf
HeartKids NSW News – Autumn 2007
HEA402-HeartkidsNews_autumn.pdf