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Magazine for families and friends of HeartKids Victoria-Tasmania
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Quarterly Magazine for Victoria and Tasmania
* HeartKids at 'The Block' * PJs Run
support • awareness • research • advocacy
* Super Boss Day Launch
Spring 2014 Volume 24 Issue 3
Permission to reprint any of the personal stories in this magazine is required
from the author or the Chairperson. Any other articles may be reprinted with an
acknowledgement to HeartKids Vic Inc.
Please note that articles published in this magazine do not imply endorsement
and may not reflect overall views of HeartKids Vic Inc.
Also note that the opinions expressed in child stories represent personal
experiences and that medical details are specific to each case. Although the
conditions may appear similar to your child’s, other details may differ. Parents
requiring more specific information should check with their child’s cardiologist.
As 2014 starts its wind down, it is not only a time to reflect on the year that has been, but also to plan and look forward to the year ahead.
The past year has been an exciting one for HeartKids on a number of levels. We have
started to strengthen our work with heart children and their families in Tasmania with the
formation of our Tasmanian Regional Committee. Board member Claire Gluyas will chair this group
and help us deliver more support and grow our local profile and the awareness of CHD.
Erin Cervelli has recently been appointed to chair our new Youth Advisory Committee which, in part, will help us ensure that our support of teens and teen transition is focused in the correct areas and developed by those in the best position to help this very important component of our work.
Tracy Stanley and her team, including several heart families, have been assisting Grant Smith from Ericsson Global to develop a HeartKids App to make information more accessible to those who require some basic support and assistance whether en route to hospital, outside of normal business hours or even in preparation for a visit to Melbourne for treatment. Our sincere thanks to Grant and the families helping with this new initiative.
Recently we have started to recognise the invaluable support of our corporate “champions” through our Corporate Membership program which will continue to develop and shortly we will also formalise our new HeartKids Heart Awards to give due thanks and recognition to many of the people, organisations and other groups who support our work on so many different levels.
Whilst this is only a snapshot of the year that we are rapidly leaving behind, it does provide a small insight as to how the organisation, which you support, is changing.
So then, what does 2015 have in store for us?
Many of you may know, but for those of you who do not, 2015 represents our 25th anniversary. We have started to discuss how that milestone should be recognised and celebrated.
Part of that process is identifying various people and activities that have helped make us who we are today. We will be calling on our members and supporters to contribute so stay tuned.
Next year we will hopefully continue to evolve the initiatives from this past year, plus a few new ones. Perhaps the most significant of these will be “Super Boss Day”, designed as both a major fundraising and awareness initiative, and scheduled to take place in February. Our sincere thanks to a number of people who are helping to develop this campaign, particularly Eddie McGuire, who has agreed to have his image used, and Mike Brady who is championing this project. Please visit our website for regular updates.
And finally, thank you all for being such an important part of the HeartKids Family.
Warm regards Norm
Norm Hutton CEO, HeartKids Vic/Tas
Our Team HeartKids Vic Inc Board 2013-2014 * Chairperson: Phil Riggio * Vice Chairperson: Terry Hopkins * Treasurer: Joseph Eid * Secretary: Tania Tytherleigh * General Board Members: Anthony Flapper Claire Gluyas Erin Cervelli Jonathan Mackley David Cervelli
HeartKids Vic Inc Employees * Chief Executive Officer Norm Hutton 0409 874 452 [email protected] * Support Manager Tracy Stanley 0478 091 773 [email protected] * Family Support Coordinators Sherrie McDonald 0431 544 510 [email protected] Amy Heafield 0421 518 366 [email protected] * Member Activities Coordinator Lynette McCoullough [email protected] * Membership/Magazine Coordinator Margaret Patullo [email protected] * Development Manager Sandra Zlatanovski [email protected] * Operations and Administration Coordinator Paola Rossi [email protected] * Fundraiser & Events Coordinator Pruedonce Bainbridge [email protected] * Magazine [email protected]
Front cover: Super Boss Day Launch
Photo courtesy of: William Watt Photography
Thanks to all who sent photos and information for this edition.
Contributions are always welcome - send to: [email protected]
Thanks to Fuji Xerox and Documents On Call for printing our magazines.
Thanks to Gordon Patullo for post processing of some digital images.
HeartKids Vic Inc proudly supports children with heart disease and their families throughout Victoria and Tasmania.For Tasmanian enquiries - please refer to the back page for our Tasmanian Branch Coordinators’ contact details.
Matters of the Heart - Chief Executive Officer
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In This Issue 3 Coming Events
4 PJs Run
4 "Off the Cuff" Luncheon
5 Super Boss Day has a Super Launch
6 Hearts, Hats & Hooves Cocktail Party
7 Biggin & Scott Ongoing Support
8 Fundraising Events
9 CHD Education Days and Research
10-11 Scarlett's Story
12 Congratulations
13 Support News
14 RCH Education Institute
15 Hospital Happenings
16-17 Reflections 18 Branch News 19 Tasmania News
20-21 Kiwanis Sponsored Family Activities
22 Donation Acknowledgements
23 Sponsors and Supporters
24 Contact Details and Diary Dates
Coming Events
World Festival of Magic - Melbourne Date: Saturday 22 NovemberTimes: There are two (90 minute) show times – 11am & 2pmVenue: Melbourne Convention Centre, Plenary Hall,
1 Convention Centre Place, South WharfThanks to the Lions Club of Melbourne, families with a heart child or heart angel are invited to apply for free tickets for their immediate family to attend the World Festival of Magic.If you would like to have free tickets sent to you, please book on www.trybooking.com/GCXT If the booking goes though, you will receive a confirmation email from Trybooking. This can not be used to enter – you must take the tickets that we will post to you.RSVP as soon as possible. For further information, please contact Lynette on [email protected] or 0418 548 879
Super Santa at Broadmeadows – see Santa arrive in style!Date: Saturday 22 November 2014Where: Broadmeadows Shopping Centre, 1099 Pascoe Vale Rd, Broadmeadows • Wear your favourite superhero costume to see Super Santa arrive
in style at Broadmeadows Shopping Centre, from 11am. • You can also grab a photo with superheroes for a gold coin
donation and build your very own Stufflers teddy bear. • Come along to the screening of ‘How To Train Your Dragon 2’,
exclusively at Hoyts Broadmeadows at 2:30pm to help raise funds for HeartKids.
Ticket prices: Children under 13: $5; Adults: $10; Family: $20 (2 Adults, 2 Children)
Broadmeadows Shopping Centre proudly supporting HeartKids.
Win a Car Raffle The Rotary Club of Ballarat South is running a raffle with part-proceeds coming to HeartKids Victoria. • 1st Prize: Kia Sportage Si Platinum • 2nd Prize: Kia Rio S 5-door Hatch • 3rd Prize: $5000 Homewares Voucher Raffle drawn 15 February 2015. Tickets are on sale now at $2 per ticket (available in books of 10). Please contact us if you would like to buy a ticket or help us by selling raffle tickets in your local community T: (03) 9329 0446 E: [email protected]
Variety Children’s Christmas PartyDate/Time: Thursday 11 December from 11:00am – 1:30pmThe Variety Children’s Christmas Party is a fun-filled day with carnival rides, interactive activities, live entertainment, fairy floss and Santa!We had limited spaces available at the Variety Children’sChristmas party to be held in the Melbourne CBD area. Age limit for the Christmas Party is 1 day to 13 years inclusive. We can keep you on a waiting list - please email [email protected]
Christmas Party for Special ChildrenDate: Sunday 14 December, 9.30am - 1.30pm Venue: Moonee Valley Racing ClubThis event was advertised by Facebook and by email/mail to families who have a heart child or heart angel and siblings under 17 years of age [at 14th December]. The event is fully booked at the moment. We can only offer a waiting list so please register immediate family only (heart child, siblings of heart child and/or angel, parents) by booking on www.trybooking.com/GASM Please note that if you have already registered, you will be sent official tickets before the event. You will need to bring these tickets to enter the party. 3
Wil-liam Watt Photog-raphy
PJs Run Raises $20,000 for HeartKidsOn 27 July more than 450 runners donned their pyjamas for the inaugural People’s Choice PJs Run to raise funds for HeartKids. The swarm of bright green and red tartan pyjamas worn for the charity event was quite a spectacle, as runners, young and old, took on the 3.5km leg of Run Melbourne.
People’s Choice Credit Union took the opportunity to introduce the PJs Run as part of their sponsorship of Run Melbourne. HeartKids was chosen as their charity partner which saw a dynamic partnership between HeartKids VIC/TAS, HeartKids SA/NT and People’s Choice Credit Union.
The PJs Run was a great success. The weather was perfect as hundreds of pyjama clad runners, including Patch the Heart Lion, ran, walked and jogged through Central Melbourne. The event raised more than $20,000, to be shared evenly between HeartKids VIC/TAS and HeartKids SA/NT.
A massive thank you to People’s Choice Credit Union for their wonderful support.
"Off the Cuff"
Off the Cuff is designed as a networking luncheon where business people can create new relationships, learn about HeartKids and how they can assist us in our work. This was immediately achieved at our August function when those in attendance did a quick whip around for Adam, son of our guest heart dad Mathew whose birthday was coming up. As a wonderful post script Adam decided to share the Off the Cuff donation by buying gifts for some of the other children on the ward.The Kelvin Club has made HeartKids one of their two official charities and our thanks goes out to Jerome and his team for making us feel so at home.Jet Couriers, who sponsored our August event, have agreed to continue this support with sponsorship of our November event. A very big thank you to Bret, John and the entire crew at Jet Couriers.HeartKids is intending to hold four Off the Cuff events each year with our next featuring Derryn Hinch who will be interviewed about the major news stories he has covered, anecdotes about the people he has met and the stories behind the stories.
In August HeartKids held our inaugural “Off the Cuff” luncheon at The Kelvin Club. Our MC was television and radio personality Glen Ridge who introduced our very special guest speaker Brian Waldron.Brian spoke at length about his professional journey as one of Australia’s leading sports administrators, including his personal account of his time throughout the Melbourne Storm controversial salary cap scandal.The 60 people in attendance were privileged to hear Brian’s account of what had occurred, how it occurred and its impact on him professionally, personally and on his family.Brian had not spoken publically in the four years since those events and did so in part as recognition of his brother who was born with a serious heart disorder and the obvious association with the work of HeartKids.
People's Choice presented HeartKids
Victoria/Tasmania with a cheque for
over $12,000 being proceeds of the PJs Run and the
Community Lottery.
People’s Choice is one of Australia’s largest credit unions with more than 350,000 members across Australia; 60 branches in Victoria, South Australia, Northern Territory, Australian Capital Territory, New South Wales and Western Australia; $8 billion of funds under management and advice; and over 1,100 employees.
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Wil-liam Watt Photog-raphy
Super Boss Day has a Super LaunchOn October 15 HeartKids launched a new fundraising
initiative called Super Boss Day.
In simple terms Super Boss Day will enable staff to
either nominate their “Boss”, or he or she can nominate
themselves to dress up as a Super Hero on February 19....
all for HeartKids.
To fulfil their commitment to turning up at the office as
Superman, Wonder Woman or the like, they need to set
and achieve a fundraising target.
The launch was a spectacular event held on the Sky
Deck, the 88th floor of the Eureka Tower. Our special
thanks go to John Forman and his team at Eureka Sky
Deck who embraced the idea and fully sponsored the
launch which was in every sense a major media event.
We had several heart children in attendance who,
along with everybody else, were mesmerised by the
appearance of Catwoman, who abseiled outside of
the windows, and Batman who landed on top of the
iconic Edge attraction.
Hosted by popular entertainer Mike Brady, Michelle
Bodinnar spoke of her family’s CHD journey with
three year old Maisy.
Anita Grimbos (Grimbos Building Surveyors), Russell
Cambridge (Biggin and Scott) and Karen Beard
(People’s Choice), who had all committed to Super
Boss Day, were interviewed as to what outfit they
would be choosing. Russell bravely advised he may let
the staff choose.
The Super Boss Day launch was the culmination of over six months of planning and
we cannot thank them enough for the support and input from Cyclone Advertising
Agency, Progressive PR and Sage Strategy. Not to mention Chris Davis (Batman)
and Rowena Davis (Catwoman). Also to Mike Brady, who has been our champion
throughout the planning, and lastly but by no means least to Eddie McGuire who
has supported HeartKids and lent his image to all of the promotional collateral.
Now spread the word - Super Boss Day, 19th February (Bruce Wayne’s birthday)
and go to www.superbossday.org.au to register and find out more details. Also
feel free to google super boss day launch and see more amazing photos.
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Hearts, Hats and Hooves Cocktail PartyThe HeartKids Victoria/Tasmania Hearts, Hats & Hooves Cocktail Party was held on Thursday 18 September 2014 at the MAIA Room, Atlantic Docklands.
Our guests launched themselves into the excitement of the spring racing theme, dressed for an evening of racing, fashion and frivolity which suited the stunningly decorated room. The highlight of the evening was the fashion parade giving guests a first-hand look at the fashion and millinery forecast for the upcoming racing season coordinated by The Style Mission. The parade featured traditional and elegant men’s, women’s and children’s race wear from Ted Baker and Bardot Junior, Danica Erard Millinery and Bag Queen. Everyone was surprised and touched to know the child models were all heart children and listening to the children’s individual stories had a huge impact on the guests.
There were fantastic prizes on offer for our guests from the Fashions on the Fields competition, Lucky Champagne and Whiskey glasses, Race a Jockey on the final furlong and Raffle. Our Silent and Loud Auctions had a great range of items and proved very popular on the evening. Guests were delighted when People’s Choice presented HeartKids with a cheque for over $12,000 raised via the PJs Run and Community Lottery!
Thanks again to our fabulous Master of Ceremonies, Channel Ten’s Emma Notarfrancesco, music from Bangstrum LADS, all the racing personalities, models and to all those who contributed, donated, sponsored and attended – HeartKids is very thankful for all those involved in making this night such a success.
The evening would not have been possible without the support of Rigoni Hall, Austage Events, Mediatec, Showtech, Staging Rentals, Theme from Jak, Atlantic Group [v], Robert Oatley, Harry the Hirer, Freelance Cameras, Bardot Junior, The Style Mission, Bag Queen, Danica Erard Millinery, Ted Baker, Ian Sharp Jewellery, 2ds creative, The Sweet Society, Malua Racing, Bangstrum LADS, Epic Photography, Magnificent Miss, Signwave, Fitzwilliam Institute Group, Ivory Rose Makeup Artistry, Signed & Framed and Biggin & Scott Richmond.
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On the evening of 28 August, Biggin and Scott held their annual awards night at the Royal South Yarra Tennis Club. HeartKids Australia CEO Jann Kingston, HeartKids Victoria/Tasmania Chairperson Phil Riggio, CEO Norm Hutton and Support Manager Tracy Stanley attended to represent HeartKids. The evening featured the presentation of various awards to members of the Biggin and Scott team.
Biggin & Scott partner, On The Move, presented our CEO Norm Hutton with a cheque for over $10,000. On the Move make moving easier by connecting utilities such as gas, electricity, water, phone, broadband and pay TV. Visit www.onthemove.com.au for more details.
A highlight of the evening was the battle between auctioneers with each office sourcing an item for one of their auctioneers to auction off. All proceeds were donated to HeartKids and we are pleased to advise that over $5000 was raised.
Biggin & Scott are amazing supporters of HeartKids and we thank them for their passion and dedication to our cause.
Biggin & Scott Annual Awards
HeartKids at 'The Block'Biggin & Scott Real Estate are wonderful supporters of HeartKids. We were thrilled that when they were involved as auctioneers for Darren & Deanne Jolly’s apartment on ‘The Block Glasshouse’ they involved us.
Biggin & Scott hosted a party for ten heart children at Darren & Deanne Jolly’s apartment prior to the open for inspection days. Mee’s Bus Lines provided a bus to transport families from The Royal Children’s Hospital, The Cake Angels donated circus themed party food, Betsy the Clown from Lil Critters entertained the children and ambassadors Glenn Archer, Robbie Kearns and supporter Damien Oliver attended. Our families had a wonderful time. Darren & Dee were very welcoming and posed for lots of photos and showed the children and families through their beautifully renovated apartment.
HeartKids had a Lolly Shop themed marquee at both Open for Inspection days. It was a wonderful opportunity to raise awareness with the huge crowds of people who queued to visit the apartments. Darren & Dee dropped in both days and Shelley Craft also visited.
Biggin and Scott generously donated their commission to HeartKids.
A massive thank you to Biggin and Scott, Russell Cambridge and Darren and Deanne Jolly.
Biggin & Scott Ongoing Support
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Simple Pleasures Brunch
Fundraising Events
Magnificent Miss 2014Magnificent Miss organised by Emmanuel Ammo Hairdressing
is a fashion-driven event that benefits HeartKids. It offers
young models, hairstylists, make-up artists, photographers
and fashion designers in Australia the opportunity to be part
of the event to display their natural beauty and talent. It seeks
to foster youth development and provide an opportunity for
ambitious individuals to gain valuable experience displaying
their abilities as well as compete for recognition of their talents
and be rewarded for their efforts.
The 2014 event was held at Melbourne Pavilion in Kensington
on 24 August and raised over $5000 for HeartKids. Madison
Vluic was crowned Magnificent Miss and Anthony Rose
Magnificent Mr. We look forward to working with Maddie and
Anthony throughout the year.
The inaugural Simple Pleasures Brunch was held at The Botanical, South Yarra on 17 October. Russell Cambridge, from Biggin & Scott was a very entertaining MC. The event was a sell-out with the eighty guests enjoying delicious food and fantastic company. Tracy Stanley, Support Manager, gave guests an insight into the world of CHD and the support that HeartKids provides to the children and families affected. The balloon raffle, auctions and sales of cupcakes donated by Emanuela from Tortissime raised $5000 which will fund HeartKids twice weekly morning teas at The Royal Children’s Hospital.HeartKids Victoria/Tasmania would like to thank Nikki, Luisa, Melissa and Trish for their tireless work in making the event an outstanding success.
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Coping with your child’s heart disease
CHD Education Days and Research
The HeartKids Education Day was held on Saturday 2 August 2014 at The Royal Children’s Hospital. The objectives of Education Day are to provide attendees with information on key issues of concern and bring together those affected by CHD and provide an opportunity to network.
The topics covered were:
• Childhood heart disease: Improvements in outcomes and possible future treatments – Assoc Prof Michael Cheung
• The patient journey once diagnosed with Pulmonary Hypertension – Michelle Rose
• A holistic approach to supporting young people with chronic illness – Pippa Sowman
• The journey into adult health services – Rebecca Peters
• Father-infant relationships following cardiac surgery – Assoc Prof Brigid Jordan
• Designing new strategies for treating paediatric heart disease – Dr Salvatore Pepe
• “Take Heart: The quest to rid the world of Rheumatic Heart Disease” – a short film by Moonshine Movies
• Paediatric Heart Transplant – Anne Shipp
• Our Transplant Story: One family’s experience – Samantha McGowan
The HeartKids Education Day was proudly supported by IKEA.
Fontan Education Day 2014On 3 August 2014, the first Fontan Education Day was held at The Royal Children’s Hospital
with great success. There were over 200 attendees from all over Australia and New Zealand
including people with a Fontan circulation and their loved ones, researchers, support groups,
cardiologists and physicians from both paediatric and adult hospitals.
The Fontan Education Day was jam packed with presentations, discussions, debates
and workshops that considered a number of areas of interest to Fontan patients and
their families, e.g., lifestyle, medications, research being undertaken, research findings,
pregnancy/contraception, surgery, exercise, transition to adult care and much more.
We had some great feedback from the day which included: “The best way I can describe
it is that I feel like before the day I was walking with my head down, just looking at the
future just in front of us; now I feel like I can look with confidence into the future - and that
there are a lot of amazing and committed people who are doing their very best to help us
achieve a better future. It’s changed our whole mind set”.
For those who were unable to attend the Fontan Education Day or would like to access the
information that was presented, it has been made available on the Fontan Registry website
(www.fontanregistry.com), under the news and events page. You are able to view all the
presentations from the day as they have been recorded in full.
The Fontan Registry would like to thank all those who attended, supported and presented
at their Education Day - without you it wouldn’t have been possible to make the day such
a great achievement. There are plans following the success of the 2014 education that the
next Fontan Education Day will be held in Sydney NSW in 2015, so watch this space!
HeartKids Australia has funded the Heart Research Centre to undertake a study of
how parents cope with their child’s heart disease.
The Centre is interested in finding out whether parents believe they would benefit
from a parent coping program, and how such a program could be made most
relevant for those parents.
If you are interested in being interviewed for this study, please call Emily Morison at
the Heart Research Centre, on 03 9326 8544.
The project is being led by the Director of the Heart Research Centre, Professor Alun
Jackson, who would be happy to answer any queries you may have about the study.
He can be contacted on 0422 444 067.
Did you or your child have
Kawasaki disease or viral
myocarditis in the past?
Murdoch Children's Research Centre is
recruiting volunteers for a study of these
illnesses.
The study will explore why some children
develop the illness by looking at the
response of immune cells (that fight
infection), their longer term cardiovascular
(heart and circulation) health, and
factors in the blood that may suggest
ongoing inflammation and cardiovascular
abnormalities of these children.
Recruiting Participants Now
You may be suitable if you/your child are:
• Aged 6 to 30 years
• Interested in your cardiovascular health
• Able to attend the Heart Research
department for a once-off study visit
(travel costs* will be reimbursed)
• The study visit will involve a blood test,
ultrasounds, blood pressure measurement
and eye photographs
Contact Dr Katherine Chen for more
information on (03) 9936 6553 or email
* Parking costs at The Royal Children’s Hospital and
public transport within Victoria
Kawasaki Disease & Viral Myocarditis
HeartKids Education Day A one day seminar for those affected
by childhood heart disease (CHD)
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The decision to have a third child was not one we took lightly. Both our boys had been born prematurely, Hunter at 31 weeks and Campbell at 34 weeks. We asked ourselves if we could go through another period of having a baby in hospital and if we could put that stress onto two children and onto our family members. We decided that whatever happened we could work through it as a team and we were lucky enough to be blessed with our third pregnancy.
At the 20 week scan, we were excited to find out that our baby was a girl but we knew something was wrong when the ultrasound technician spent a lot of time taking images of her heart. She wasn’t sure if it was the angle of how Scarlett was lying but it appeared as if her left ventricle was smaller than her right. To be safe we were sent to Melbourne later that week and it was confirmed that Scarlett had congenital heart defects.
We were counselled on termination, and given statistics, diagnoses, prognoses and medical terms that flew over our heads. We were beside ourselves with grief and despair, and our family was rocked to its core. However, during that night, Dale felt Scarlett kick for the first time so we knew that whatever happened, we had a strong little fighter on our hands.
At 35 weeks I was admitted for monitoring as Scarlett was measuring small and with my history of preterm labour, it was decided that they would like to keep a closer eye on us both. Four days later, on the 28th August 2012 at 12:20pm, we welcomed our gorgeous girl into the world. She came out with a mop of thick black hair, the reddest lips and screaming!
She was taken by the NETS (Newborn Emergency Transport Service) team to The Royal Children’s Hospital at three hours old while I recovered at the Royal Women’s Hospital. Finally at four days old I got to hold my little girl for the first time. With just a drip in her arm it was difficult to comprehend what lay in store, and how sick her heart really was. She was perfect - tiny but perfect. She was scheduled for surgery the day after Father's Day so we moved across to emergency accommodation, which was our home away from home for the next four weeks.
At six days old we wheeled Scarlett into Pre-Op and we left her in the arms of the medical professionals. An agonising ten hours later, we received the call from cardiac surgeon, Christian Brizard, saying that she had come through surgery. It was more complex than first thought with a hypoplastic aortic arch repair and a defective mitral valve. With Scarlett at 1.9kg, he was working on an organ the size of a walnut.
We saw her at around 9pm that night. Instead of one IV drip, there were numerous. Her chest was open and instead of one
nurse, there were two PICU doctors and more than four nurses. We were shell shocked. How could our girl that appeared so well the day before now look so ill and fragile? How could one so little, survive such a battle? There were many tears and many hugs, many prayers and many jokes – anything to survive in an abnormal environment. Scarlett’s room was filled with toy elephants – a symbol of luck and strength. Her room was the best dressed room in PICU! Scarlett battled on and we settled into a routine.
At just over four weeks old, the words ‘moving to the ward’ were mentioned and on the 15th October we made the huge move out of our PICU comfort zone to Koala Ward. Scarlett, though, had other ideas and after bouncing back and forth and with a few MET calls, she was rushed back to PICU where she was again ventilated and her second surgery, this time to repair her mitral valve, was planned. Scarlett underwent this surgery and her mitral valve was once again repaired. Our baby was no longer purple and mottled with a heart rate over 180 - she was pink and beautiful with a normal heart rate. After only a comparatively short two week stay in PICU, we were back on Koala Ward and by late November we began making plans to bring her home.
Campbell’s fourth birthday was approaching so Bryn Jones, Scarlett's cardiologist, and Bettina, her care manager, worked together with us in organising day leave so that she could attend his birthday party. However her routine echo prior to discharge had found that her mitral valve had now become severely narrowed, causing increased pressure into the lungs and it was decided that a third repair attempt was to be made. Instead of bringing our girl home she was taken back to PICU and underwent her open heart surgery on the 13th December 2012.
After a mammoth thirteen hours, we received the call from Christian. This was her last chance. The repair did not go well so he replaced her mitral valve with a bovine valve – the first patient ever to have this type of valve used as a mitral valve. She was returning to PICU on ECMO. We had seen Scarlett fight so much – how much more could she go through? Being the first, there were no cases, no history or statistics for us to latch onto, just hope and faith in the feistiness and courage of Scarlett.
Four days later, she was taken off ECMO. We knew the first hours were critical but as she appeared stable and was in the best of hands with her nurses, we quickly went downstairs for lunch. All of a sudden we heard a page “Cardiac Surgery immediately to PICU”. We ran, with absolute fear, knowing that something was not right. We were ushered into the meeting room where we were told that Scarlett had gone into cardiac arrest and was being put back on ECMO. We sat and watched helplessly. Good friends that we had made in the hospital gave me a hair brush so that I could brush her hair…I was so frightened to touch her as she had been cooled, but this was my way of having contact
Scarlett's Story
10
with her. I would sit and brush her hair; the nurses would put clips in it. Anything to make a terrifying situation have some sort of normalcy.
Now as I sit and write this, almost 22 months on, the emotional pain is still so raw. We were told that the next time they removed her off ECMO it was a “one way de-cannulation” – there was no going back on. It was up to Scarlett and the odds of her coming through and surviving a year was about 10%. I looked at our nurse who had come in with me and she said, “He is giving you odds…no one knows Scarlett’s character”. We knew we had a girl who liked to do things her way, who was stubborn and who was strong. For the first time in her entire hospital stay, her room doors were closed. We called our families in and discussed what we wanted afterwards – just in case. The nurses who had become our surrogate family visited us, hugged us, shared tears with us and prayed. Those nurse’s words proved to be prophetic and Scarlett came off ECMO, was stable and we were able to celebrate her first Christmas in PICU with her RCH family of nurses, doctors, as well as her excited big brothers.
Finally after a 5½ month roller coaster we were able to bring our girl home. Our family home was complete and her brothers adored her. Except for a few short stays in hospital due to viruses, our life has resembled that of a ‘normal’ family. Scarlett now attends crèche one day a week and loves music class. She is still a feisty little miss and loves being the centre of attention (we blame her extended stay in PICU for this!) Tutus, yoghurt, her baby doll and trying to join in footy with her brothers are just a few of her favourite things.
I wish that I could say her roller coaster is over but it is not. It will continue throughout the rest of her life. In January of this year her mitral valve had again become severely narrowed. An experimental procedure was attempted to balloon her valve to buy her some more time before requiring another replacement. Again, thanks to the pioneering surgeons and their phenomenal skill, this was a success and Scarlett will undergo her next surgery, to replace her mitral valve with a larger one, sometime later on this year.
The hospital is our second home. Scarlett is still frequently monitored by cardiology and also has involvement with a number of other teams including the dieticians, OT, speech, physio, genetics, neurology, general medicine and ENT. It is also a place where our boys feel comfortable, where the staff and volunteers care not only for Scarlett but for all of us. Dale can joke with the nurses, I can chat to other heart mums and feel safe and understood and not alone. We have made lifelong friends through our time there and for that we are forever grateful. Of course there is not a day that goes by that I am not filled with anxiety about her future, wondering .... if a cough is just a cough or the start of something more sinister …. what her heart is doing as she begins walking …. how I will juggle the next surgery .… what impact this has had on her brothers .… but then she smiles and she laughs and she gives you the best cuddle. And it’s all worth it.
Written by Scarlett's parents, Dale & Sasha
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Congratulations!
Salvatore & Sheridan del Popolo welcomed their new baby boy, Remy, born on 14th April. He is a brother to HK Winter.
Peter & Nadia Melih have welcomed their new son, HK Luka Jeremy, on 3rd June.
Wayne Lyons & Rachel Tregea have a new baby girl, HK Lilli, born on 15th June. A baby sister for Corey, Courtney, Shanae,
Jordan, Brodie, Caprice & Beaumont.
The Smith Family has announced the arrival of a new daughter, HK Faye, on 19th June. She is a baby sister to Elsie.
Matthew van der Ende & Maxine Selzer announced the birth of their son, HK Xavi, on 24th June.
Paul & Kirsten Martin have welcomed the birth of their daughter, HK Savannah. She was born on 29th June and is a
sister to Noah.
Rod Bell & Mindy Kerr have announced the arrival of their son Rylen, born 30th June. Baby brother to Hailey, HK Brody
and Mason.
David & Nadine Higgins would love to announce the arrival of their beautiful baby girl Lily Eve on 9th July. A baby sister for
Zara, Ella and heart angel Eve.
Jagdish Singh & Rebecca Wells announced the arrival of baby Ava Grace on 9th July. She is a sister for HK Asha.
Jeremy & Dawn Reynolds announced the birth of their daughter HK Millie on 11th July. She is a baby sister to Harvey and Chloe.
Josh & Felicity Pitt have a new baby girl, HK Lucy. She was born on 20th July and is a sister to Grace.
Ben & Danielle March are pleased to announce the arrival of their son HK Archie. He was born on 23rd July and has two big
sisters, Annabelle & Kaylee.
Glen & Amanda Reed welcomed Amelia Jo-Anne, born on 24th July. Amelia is a baby sister for brothers Lachlan and HK Jamie.
Michael & Melissa Musgrove have welcomed their baby boy, HK Liam. Born on 29th July, he has two sisters Addison & Eryn.
Jarrod Hibberd & Melanie Humphrey welcomed HK Lachlan, on 31st July. He has two big brothers, Kaiyn and Archer.
Raff & Gavin Michie proudly announce the birth of their new precious daughter, Lilly on the 7th August. Little sister
to HK Elise.
Lee Hall & Tash Unglaube were excited to announce that their new son, HK Aiden James, was born on 8th August.
Paul & Mary Bergman are excited to announce the birth of their daughter HK Willow Beryl on 14th August. Little sister to
James, Ellisha, Lincoln and Amelia.
Chin & Tamara Ooi have welcomed baby Joshua to their family. He was born 31st August and is a brother to Samuel, Aleisha
and HK Ashton.
Glenn Bryce & Rachael Callow are excited to announce the birth of their son HK Ryder David. He arrived safely on 2nd
September. Baby brother to Callum and Kaydee.
Glenn & Michelle Kramer have announced the arrival of their new baby, HK Lachlan born on 9th September.
Jarrod Sultana & Janelle Jorgensen have proudly announced the birth of their son, HK Raphael Louis, born on 11th
September.
David & Zoe Gonzalez proudly announced the birth of their son James on 13th September, a brother to HK William.
James & Monique Earl have announced the birth of their new son, HK Nate on 18th September. A baby brother for Mitchell
& Darcy.
Clint & Dana Hodson have announced the arrival of their daughter Mary on 21st September. She is a sister to HK Lucy.
Tim Brennan & Djena Jones have welcomed the arrival of their daughter, HK Marlee, on 28th September. She has a big
brother Mehkai.
Kerryn, Damian and Lucy Harrison are excited to announce the early, but safe arrival of Emma Kate on 20th October 2014. Our
brightest star Matilda will always be watching over us.
In each edition of the newsletter we like to welcome any new babies who were born in the last few months.
If you have a new addition to your family (heart child or sibling) and would like the baby’s birth announced in the newsletter,
please send us the details.
New BabiesCongratulations and our very best wishes to all these families
who have welcomed new babies in recent months.
Transplant GamesBec Peters works for the Transition Support Service at The Royal Children's Hospital and recently competed in the 2014 Transplant Games here in Melbourne, along with 800+ transplant recipients from all over Australia and New Zealand. Bec was the recipient of a heart transplant 15 years ago at the RCH in 1999. Bec competed in a number of events which included the Fun Run, Badminton (singles/doubles), 20km Cycle, Table tennis and Pétanque, and she medalled in every event which included 3 Gold, 4 Silver and 1 Bronze. The Australian Transplant Games are held every 2 years, each time in a different city around Australia. The Transplant Games are a great way to promote organ and tissue donation as well encouraging others to participate as a supporter or a competitor.
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Email Address UpdatesWe really like to correspond with you via email when we can. This helps us contact you quickly and saves on printing and postage costs. Please help us by letting us know your email address and keep it up to date.
Please send updates to: [email protected]
Happy Birthday!A very ‘Happy Birthday’ to all the heart
children and their family members
celebrating birthdays during Spring!
Support News
Transition News
Over the past year, we have been lucky enough to host
Narrative Therapy workshops - titled ‘Team of Life’, with our
good friends from the Dulwich Foundation. Our Team of Life
workshops ran over 6 sessions which were held throughout the
year. We had 80+ young people, parents and professionals
collectively attend these sessions, which was outstanding!
These young people attend many different clinics at the
RCH including departments like Cardiology, Nephrology,
Immunology, Developmental Medicine, Gastroenterology,
Haematology and General Medicine. It was great to have
young people from all different medical backgrounds come
together to meet other young people, who may have had
shared experiences or similar journeys.
Team of Life is a fantastic way to engage young people and
their families to reflect on their time spent at the RCH. It
enables young people and parents to share their journeys
together whilst signifying new things to come.
We thoroughly enjoyed these sessions and wanted to thank
David Denborough (Dulwich Foundation, Adelaide) and Pam
Rycroft (Bouverie Centre, Melbourne) for facilitating them. We
also wanted to thank all our attendees for making the Team
of Life sessions possible. The Team of Life ‘Extravaganza’ was
held recently to celebrate all of our Team of Life attendees,
as well as showcase the fantastic ‘teams’ that were created.
Until next time,
Bec Peters
Youth Mentor
Transition Support Service
Support MattersIt’s lovely to see the end of the cold winter weather and enjoy some lovely spring days. We are busy planning Christmas events, member activities for 2015 and expanding our support services. Please contact us if you have any suggestions.
In August the Family Support teams from around Australia came to Melbourne for the Family Support Coordinator Development Seminar conducted over two days. On 2 August we attended the HeartKids Education Day “Childhood Heart Disease – A one day seminar for those affected by childhood heart disease” and on 3 August we attended the Fontan Education Day. We really enjoy the opportunity to undertake training and also to catch up with our interstate colleagues. Professional development helps us individually, as a team and ultimately the families we support.
Please advise us when your child is in hospital. Due to patient privacy and confidentiality we don’t always know when you are in for appointments, procedures, surgery or emergencies. We only visit PICU (Rosella Ward) and NICU (Butterfly Ward) on request by families or referral by RCH staff. The Family Support team’s contact details are listed on page two of the magazine or you can let your nurse know that you’d like to see someone from HeartKids. We are here to help ease the burden of a stressful journey so please don’t hesitate to contact us.
We look forward to seeing you at a support activity soon. There are many activities planned in the coming months. Please check the Diary Dates and Coming Events sections of the magazine and the Events Calendar on our website to see what’s on.
The Family Support Team
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Each year, The Royal Children’s Hospital (RCH) Education Institute works with more than 2000 young students to support their learning needs while they spend time in hospital.These students, from as young as three years old, are identified as being at risk of disengaging from their education pathways due to the disruption of a health condition and hospitalisation. It is widely accepted that disengagement from school, education and learning is associated with poorer academic achievement, social emotional functioning and career choices for children and adolescents. The RCH Education Institute aims to keep children and young people engaged in learning throughout their time in hospital to mitigate the risk of them disengaging from learning and from their identity as learners. We do this through a highly innovative and personalised approach to the learning needs of students that recognises the importance of keeping them connected to their regular school or kindergarten, while also providing opportunities for creative learning in the hospital.RCH Education Institute teachers prepare an Individual Learning Plan (ILP) for every student they work with. This plan is developed collaboratively with the student, teacher and often one or both of the student’s parents. Teachers from the child’s regular school may also contribute to the ILP. The ILP identifies the student’s key learning goals, which are then developed into a program of activities and projects to support the student to achieve these goals.To ensure young learners have the opportunity to collaborate and engage with their peers, the Education Institute runs up to 35 group learning sessions each week in the hospital for kindergarten students, right up to students in the post compulsory school years. These sessions are an opportunity for students to experience a normalised learning environment where socialisation and discussion with other young learners is encouraged. In a health focused environment, it is essential that children’s learning needs are considered as part of a holistic approach to their health care. RCH Education Institute teachers make learning visible to staff and families in the hospital as a reminder that education remains an important part of a child’s life and identity, even as they recover from illness or undergo treatment for a health condition. Making use of a variety of hospital spaces, teachers and students demonstrate how learning can happen anywhere and at anytime, even in clinical spaces that, with creativity and imagination, can be converted to rich learning spaces. Joining community celebrations in the hospital like Children’s Week, Cultural Diversity Week and Education Week helps to keep children’s learning activities relevant and consistent with what their peers may be doing in their regular school or kindergarten. The arts play a significant role in engaging children in creative approaches to key learning areas and help to promote individual expression, problem solving and critical
thinking skills. Connecting students in hospital to the arts through partnerships with cultural organisations gives students the opportunity to discover and explore visual and performing arts. RCH Education Institute teachers have worked with education teams from the National Gallery of Victoria, Melbourne Symphony Orchestra, The Australian Ballet and Victorian Opera to bring educational programs from these organisations to the hospital and to create important links
back to community programs for students.In 2013 the Education Institute appointed a Head of Arts Education in line with our philosophy of embedding the Arts in our teaching and learning program. Since this appointment, evidence of the Arts being integrated across curriculum areas has flourished in the hospital.The Education Institute promotes project-based and passion-led learning opportunities for students in hospital. Some examples of these include the inaugural Jumbunna Film Festival that took place in November 2013 at the RCH. This festival of short films was planned, created and hosted entirely by RCH students to an audience of more than 100 guests including the young filmmakers and their families and friends. Students have also participated in publishing projects, curated art exhibitions and have planned and led enterprises such as food stalls in the hospital. At the beginning of 2014 RCH students designed artwork with environmental messages for three enormous billboards near the hospital, with the support of a local media agency.While we know that hospital-based learning programs can help to keep students connected to their regular schools and to stay engaged in learning, a recent study by the RCH Education Institute research team aimed to gain a better understanding of the level of education support available to children and young people once they had left hospital care and returned home.The What happens when they go home? study involved interviews with a number of parents and carers of students who had received education support during hospitalisation at the RCH. The survey findings revealed that one in three children were still at home and had not returned to school one month after discharge from hospital. The average length of time recovering at home for all of the students involved in the survey was 21 days. When children and adolescents returned to school, one in three of them returned only part-time.The findings of this survey suggest that there is a significant gap in education services for children and adolescents affected by a health condition once they leave hospital care. The RCH Education Institute has a strategic vision that all children and young people with a health condition are engaged as learners. To help us to achieve this vision we will continue to explore the evidence base for best practice education support for these students, both in hospital and in the time spent at home before returning to school.
RCH Education Institute
Our thanks to RCH Education Institute for providing this article.14
Hospital Happenings
IN HOSPITALA special hello and our very best wishes to all the heart children who have been in
hospital in the last three months.
RCH Morning TeasAll ward, ICU and outpatient families
are welcome to join us for morning tea, held on Tuesdays and Thursdays
from 10:30am - 12:00pm in the Parent Lounge on the 3rd Floor.
We look forward to seeing you there!Support at MonashHeartOur Family Support Coordinator
Sherrie McDonald visits the clinic on
Wednesdays 1.00pm - 4.00pm
Monash Children’s Clinic, Special Medicine
Centre (next to McCulloch House)
246 Clayton Road, Clayton
Father’s Day Gift Bags
On Father’s Day our support team distributed 55 Father’s Day gift bags to the fathers in Koala ward and Rosella ward. Special thanks to The Cake Angels Network, jarf & friends and everyone who donated items for the gift bags.
HeartKids Funded Projects
HeartKids donated Coaguchek test strips (pictured above left ) to the Haematology Department and with the support of The North Melbourne Lodge No.41 Freemasons Victoria, we funded the production and printing of the Fontan Transition brochure (above right).
Fontan transition Adolescent Transition
What is the Fontan?The Fontan operation is the last in a series of operations for children born with a single ventricle (pumping chamber) and those with complicated heart conditions where the two pumping chambers cannot be surgically separated.
After the Fontan procedure, the blood without oxygen comes back from the body directly to the lungs, without being pushed by the heart. The ventricle(s) pump blood into the body via the aorta. There is often a small communication left between the Fontan circulation and the body, which acts as a “blow-off valve”, and which can be closed at a future time if it is appropriate.
Blood withoutoxygen from lower body flows through Fontan connection to the lungs
Blood to left lung
Blood toright lung
Blood withoutoxygen from upperbody flows throughpulmonary arteryto the lungs
Blood with oxygenpumped from heart via the aorta to upper and lower body
Blood from left lung
Blood fromright lung
Why are my medications important?Commonly prescribed medications include those to prevent clots from forming, help the contractility of the heart and keep the heart rhythm regular. All medications need to be taken regularly, as prescribed, in order to be effective. If you are about to run out of medication, please let your heart specialist or GP know, so that they can renew the prescription.
Why do I have routine tests?Routine tests are necessary to monitor the performance of your heart, and your general well being. Routine tests can include ECG’s, heart echo’s (cardiac ultrasounds), 24 hour ECG recordings, exercise tests and heart MRI’s. Blood tests might sometimes be required to check the health of other organs such as the liver and kidneys.
What is the Fontan transition program?You and your parents/carers will be booked into Fontan transition clinics where you will be supported in developing greater knowledge about your healthcare and become more confident in managing your own health before you move to a cardiologist in the adult services. In these clinics which are booked alongside your other clinic appointments at The RCH, you will have the opportunity to learn more about the adult healthcare system and receive assistance with a range of different things including your education, work and peer support. The program is tailored to you. Who is involved in my Fontan transition process?In your transition clinics, you will meet members of The Royal Children’s Hospital (RCH) Transition Support Service (manager and youth mentors) who will guide you through the transition process before you move to a cardiologist in the adult setting. These clinics may also involve a cardiology nurse. Your cardiologist will support your transition process too.
Adolescent Transition Education Package | Fact Sheet 13An information sheet for patients with Fontan moving to adult health care
RCH Special DaysIt is difficult spending time in hospital, so we endeavour to bring the outside in and decorate the ward on special occasions like the AFL Grand Final, Halloween and Melbourne Cup Day.
We also celebrate children’s birthdays when they are in hospital and really appreciate the ongoing support of The Australian Cake Angels Network who provide beautifully decorated cakes.
Here are some examples of our support team spreading some much-needed cheer which is always appreciated.
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Remember when you were growing up and your parents used to worry about everything; where you went, who you were with, what time you were coming home, how were you getting home? It was so annoying; after all you could look after yourself. Why did they wait up for you to get home, even when you were in your 20’s? You could never understand what their fears were or their reasoning behind the decisions they made; it just seemed unfair and you were sure they only wanted to make your life difficult.
Until the day finally comes when you have children of your own, and you are able to empathise with their trepidation and need to protect you from anything that could possibly cause you harm; only then are you able to understand a parent’s willingness to move heaven and earth to shield their child from hurt. I remember my mother’s words, “Wait until you have children, then you will understand”. And as usual, she was right.
So when you find yourself in a situation where your child is in excruciating pain and you cannot help them to stop hurting, what do you do? When a Grandparent experiences losing a grandchild, the grief is horrendous enough. But then to have to deal with watching their own child suffering, well that can be unbearable. Their grief is two fold, and it can be very difficult to grieve their own loss, whilst trying to support their son or daughter through their pain.
Research shows that many Grandparents feel a sense of helplessness at not having been able to protect their son or daughter from pain. Even though it is important that people experience hurt, loss and disappointments, it is however a parent’s natural instinct to want to prevent pain for their child wherever possible. For it has been their parental role since the day their children were born, and even though their children are now parents themselves, they can’t let go of that sense of responsibility. And in fact they grieve as much for their child as they do for the loss of their grandchild.
One couple I interviewed said, “We would gladly take the pain away from our own child to protect them, by suffering it ourselves. Except we can’t!”
Grandmother Catherine went on to say “I was angry with myself for not being able to protect my daughter from this pain in the first place. I could have given her my life, and I would, but even that wouldn’t have helped.“
‘I watched my daughter go into the children’s store; unconsciously and instantly she went to the little girls clothes, even though she only has 2 boys now. She was lost in the frills, bows and beautiful colours;
and she drifted into a euphoric state as she stroked the pretty dresses. Suddenly as if she had been slapped sharply into reality, into remembering, she backed away looking lost and stunned.
Her eyes locked with mine. The pain was transferred like a magnetic force field that bound our emotions. The words were unspoken; there was no need for them. I walked to the car feigning an excuse, and the tears flowed uncontrollably. I didn’t want to break down in front of my daughter for she had enough to deal with. I should be stronger for her, I should be there for her. But some days I just can’t.
I sobbed for the Granddaughter I would never hold again, and for the daughter that would never be the same. For all that had happened, for all that could have been and never would be.’
Grandparents are often forgotten because attention is focused on the parents of the child; and even assisting the other grandchildren, siblings of the deceased child, through this traumatic experience. They sometimes cannot grieve openly, as their own pain is secondary. However it is vital that grandparents allow themselves the opportunity to grieve and to process the loss.
Grandmother Stella said she felt withdrawn for a long time, and couldn’t look forward to the future, as she watched her daughter suffering day after day.
“I couldn’t get my head around what had happened. The trauma of the situation shook me up. I went into protective mode and my first worry was about my daughter. I didn’t even grieve for my granddaughter until a long time afterwards, because my focus was on helping my daughter, as I felt more for her than for myself. I couldn’t change what had happened, but I could help my own child. The delayed grief for my granddaughter made things tremendously harder for me later on. But I wouldn’t have done things any other way.”
The relationship between a grandparent and a grandchild is a very special and unique one, as they play a critical role in their children’s family life. They are often mentors, advisors and role models for their adult children and also their grandchildren. Therefore when a grandchild dies, the grief for the grandparent is very intense, and they can experience the same loss as the actual parents; and the same sense of emptiness a parent feels.
Grandparents may also encounter what is commonly known as ‘survivor’s guilt’. No one ever expects to outlive their own children, let alone their grandchildren. Thus a grandparent may feel guilt and misplaced
anger because they have survived their grandchild. Often, grandparents wish they could change places with the child who has died, and may feel haunted by unanswerable questions: "Why am I alive while my grandchild is dead?"
Grandparents go through all the usual steps of grieving; denial, anger, guilt and depression. Some ways for grandparents to possibly process this tragedy are allowing themselves to go through the grief process and not feeling guilty about their sadness. They can support their child at the same time; just even listening to their feelings of hurt and pain helps enormously.
Talking about the grandchild often helps the adult child, as they want people to remember the child existed; thus acknowledging birthdays, happy memories and anniversaries of the child’s death is going to help the parents with their healing. Although grandparents cannot take away their pain, helping them move through life without their child and helping them adapt is all they can do; and consequently knowing they are assisting their child will help with their own healing.
Many grandparents said they found it helpful to redirect their anger into something positive and worthwhile, like raising money or funding various events or scholarships in honour of their grandchild that died. It provided huge relief for them to be able to talk about their grandchild and do something constructive.
Grandfather John who I interviewed said that he avoided talking to his daughter about the loss of her daughter, and the effect of this was loneliness and isolation, on both their parts. He said he thought if he spoke about his granddaughter, he would upset his daughter and he was also afraid of breaking down himself in front of her. However when he finally did start talking openly, he found everything much more manageable.
A grandparent’s grief is in some ways harder than anyone’s, and they too need support. What they are going through should not be underestimated.
‘The ache in my chest has become my constant companion. I cannot heal her broken heart. I cannot bring back our baby girl. I cannot tell her it will all be OK, because I don’t know that it ever will. What can I do to bring that smile back into her eyes and take away her anguish? Watching her suffer inflames my suffering. I am powerless and I am broken. She is tormented and cries constantly for her daughter, and I cry for mine.’
Written by Christina Georgiades
Grandparents: The Forgotten Mourners
Reflections
Heart Angel Remembrance
We remember these Heart Angels whose birth date or anniversary is in the Spring months.
Birth DatesEliza Davis 3rd September 2010Cody Kent 5th September 2003
Meher Pahwa 10th September 2011Avelynn Wood 10th September 1999Estelle Slater 11th September 2013Peter Elder 13th September 2001
Thomas Goodfellow 24th September 1999Bryce Ibbs 7th October 1989
Rowan Seward 7th October 1994Kiara Ward 8th October 2005
Jesse Cotter 12th October 1990Matthew Moran 20th October 2004
Oskar Dobell 26th October 2013Simon Holmes 28th October 1994Jacob Holden 5th November 2001Alyssa Alsop 7th November 2001Katherine Lin 8th November 2013Owen Crew 15th November 2005
Mia Campbell 16th November 2009Georgia Morrison 16th November 1998Michael Meares 19th November 2007Frank Desensi 20th November 2004
Anniversary DatesAsha McNamara 10th September 2011Phoebe Rolando 12th September 2012
Eliza Davis 13th September 2010Blake Gordon-Cooke 13th September 2013
Peter Elder 14th September 2001Dylan Grilli 17th September 1994Cody Kent 18th September 2003Kiara Ward 21st September 2011Jaime Ekberg 3rd October 2007Finn Adair 11th October 2006Corey Lake 11th October 2013
Thomasina Brasier 12th October 2012Estelle Slater 20th October 2013
James Kelleher 22nd October 2008Oskar Dobell 26th October 2013
Kiera Ziegenhardt 29th October 2010Simon Holmes 8th November 2012Alyssa Alsop 11th November 2005Adem Urban 12th November 2013Meher Pahwa 14th November 2011
Stephanie Williams 14th November 2013Jack Farley 23rd November 2013
Zach Beadel 29th November 2010Thomas Goodfellow 29th November 2010
Katherine Lin 30th November 2013
Reflections
Thinking of YouOur thoughts and prayers are
with the families and friends of all
Heart Angels in their time of loss.
Vale Dr Alex VenablesDr Alex Venables, founding Director of The Royal Children’s Hospital Cardiology Department, has died, aged 92.Cardiology emerged as a specialty in the late 1950's. Dr Venables was a young paediatrician when he was selected to be trained as a cardiologist at The Royal Children’s Hospital. By 1968 he established the Cardiology Department and served as Chief Cardiologist until his retirement in 1988. Under his leadership the Cardiology Department developed investigative procedures that set a new standard in cardiac care for children.Dr Venables was a man of great integrity, a pioneer in the field of Paediatric Cardiology, who saved the lives of many children.The HeartKids community sends their heartfelt condolences to Dr Venables’ family.
In loving memory of
Breanna Fry
2nd June 2010 - 3rd August 2014
Matthew 19:14
...But Jesus said, “Let the little children come to Me, and do not
forbid them; for of such is the kingdom of heaven.”
Little AngelsWhen God calls little children to dwell with Him above,
We mortals sometime question the wisdom of His love.
For no heartache compares with the death of one small child
Who does so much to make our world, seem wonderful and mild.
Perhaps God tires of calling the aged to his fold,
So He picks a rosebud, before it can grow old.
God knows how much we need them, and so
He takes but just a few
To make the land of Heaven more beautiful to view.
Believing this is difficult, still somehow we must try,
The saddest word mankind knows will always be "Goodbye".
So when a little child departs, we who are left behind
Must realize, God loves all the children,
and He holds them closely by His side.
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Branch NewsHeartKids has a number of Branches around Victoria and Tasmania. You are welcome to contact your local Branch Coordinator to introduce yourself so the Coordinator can keep you informed about activities in your area. Please see contact details on the back page of this magazine and follow us on Facebook or watch the Events Calendar on our website for upcoming Catch-up dates:
http://heartkidsvictas.org.au/events/
Simone - MorningtonOn the last Wednesday in September in 2013, our lives changed forever. We attended our 20 week antenatal scan of our first child and the excitement of seeing our baby quickly turned sour when we were told “there is something wrong with your baby’s heart…it could go either way.” We were diagnosed with Hypoplastic Left Heart Syndrome. We decided to go ahead without question, as we both knew we had to give this baby a chance at life.
Harry had his first surgery, the Norwood, when he was 3 days old. He had his second stage surgery at two and a half months as he had outgrown his shunt and his small lung arteries were not keeping up. We slipped out of The Royal Children’s Hospital quietly exactly thirteen weeks to the hour that Harry had entered the world with such commotion and fanfare.
Now we are home, we are settling back in to normal life. Some days you feel like you don’t belong in your new environment and returning to the hospital for appointments brings back an odd sense of comfort. Other days, the hospital is a distant memory and we look at Harry and wonder how a child with so much life and hair could possibly have half of a heart. What we do know is that he is a very special child who fills our life with love and laughter and we are thankful that he chose us as his parents.
As a new Branch Coordinator, l am looking forward to meeting other families so that we can share our experiences and support each other.
The Fair Dinkum Bush Dance was held on 2nd August, organised by the HeartKids Coordinators from the Ballarat Branch. The Bush Dance was held at the Dean Hall where there was lots of dancing, toe tapping, laughter and smiles all around. We were very lucky on the night to have so many generously donated door prizes from many of the local businesses within and around Ballarat region.
It was a highly successful night with many attending from all age groups. The money raised on the night was all donated to HeartKids Victoria. We also asked families to kindly bring a plate to share, so during intervals we were able to chat and eat to give us more energy to continue dancing the night away.
We would like to thank Ken Hooke our musician and band for helping us have such a fantastic fun night.
We look forward to seeing you at our next HeartKids Bush Dance in 2015.
Fair Dinkum Bush Dance
My name is Cathie Kelly. I live in Albury with my husband Matt, and our two children, Harper and Noah.
Noah, 22 months old, is our HeartKid. He was diagnosed with a large VSD (hole in the heart) at five days old. He became ill at 12 days old and was airlifted down
to RCH where he spent the next few weeks. At 11 weeks old his condition deteriorated again and he was sent back to RCH where he had surgery to repair the hole. Since then he hasn't looked back!
I have found being part of our local HeartKids group a wonderful way to be connected to other HeartKids families who have an understanding of our journey, as they have been through a similar experience.
I was excited to be asked to be the Branch Coordinator for the Albury/Wodonga area. I’m looking forward to meeting and providing support to other local HeartKids families.
Cathie - Albury/Wodonga
Coordinator UpdatesWe send a sincere thank you to two members who have recently retired from being the Branch Coordinator in their region - Karen Howard for coordinating at Point Cook and April Schubert in Albury/Wodonga. April has handed the baton to Cathie Kelly and we welcome her into this role. We warmly welcome Simone Munro, a new Mornington Coordinator. Please read about our new Coordinators on this page and find their contact details on the back page.
Tasmania NewsCarn the KidsThanks to LeasePlan and the North Melbourne Football Club HeartKids families enjoyed all the excitement of a great game of football between North Melbourne and Adelaide Crows at the Carn the Kids Fun Day Out at Blundstone Arena, Bellerive on Saturday 23 August. It was a lovely 17°C day and the match was a sellout ensuring a fantastic atmosphere.North Melbourne player Lachie Hansen joined the children and spent time chatting and signing autographs and all the children received show bags.
It was a fantastic contest with several lead changes and North Melbourne winning by 7 points.Thank you very much to the team at LeasePlan for providing such a great experience for our families.
Branch Catch-ups
BendigoA day out at the local Ten Pin Bowling (photos left).
Geelong Regular Catch-up's (photos above) and a Disco (below) in the September school holidays.
KidsFlixThanks to the Arthritis Foundations of Tasmania and South Australia HeartKids families enjoyed a wonderful day out at The KidsFlix event on 18 October at Village Cinema Eastlands. The morning consisted of an hour of children’s entertainment including face painting, clowns, Star Wars characters, Mickey and Minnie Mouse, followed by the movie “Planes: Fire and Rescue”. Everyone received a drink and popcorn to complete their movie experience.
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Kiwanis Sponsored...
On a lovely sunny day in October, numerous families gathered at the Box Hill Miniature Railway to enjoy a play in the park, a sausage sizzle lunch and free miniature train rides.
Thanks go out to the Kiwanis Club of Waverley, particularly Brian Mates, for organising this day out for our families. Thanks also to the Box Hill Miniature Railway volunteers for their attendance on the day.
Box Hill Miniature Train Day Candlebark Farm Family Camp
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...Family Activities
Candlebark Farm at Healesville was again home for fourteen of our families when we recently held our annual family camp. Families enjoyed many activities – an Art Session offered by The Art Cabriolet, Super Swooper, canoeing, low ropes course, small flying fox, indoor basketball, table tennis, rock climbing, child care activities, visit by Emergency services, dress up parade and end-of-camp party. Parents enjoyed dinner out at the local RSL.We particularly thank the following people:• Kiwanis Clubs in Division 6• SAFEONSITE• Candlebark Farm Manager, Mike • Chris Baker (First Aid attendant)
Committee members/weekend volunteers:• Bruce, Shirley, Brian, Lynette, Tash, Margaret
Weekend volunteers• Jenna, Cameron, Matt• Simone, Paul, Paige, Shaye • Nerissa, Shannon, Lauren, Andrew• Kiwanis volunteers
Candlebark Farm Family Camp - continued
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2040club
2ds creative
Abraham, Karen
Alexandra Foodworks
Ample Café and Bar
A NZ - Melbourne branch
Atlantic Group [V]
Austin, Monica
B arrett , Colin and Wendy
B eanies for babies and kids at RCH
B iggin & Scott Corporate
Biggin & Scott Fund
Bing Boys
Bodinnar, Michelle
Bruder, Amanda
Cambridge , Nikki
Campbell, Emmeline
Charlton, Julia
Coady, Jay
Compston, Julie-Anne
Coulston, Lynette
Davies, John
D ingley International Hotel
Diversified
Donut King Kiosk
Drew, Tammy
Edwards, Peter
Epic Photography
F eatherston, Kevin & Beryl
Ferguson, Robert
Fisher, Lydia
Flavour Café
Foster, Di
G allagher Bassett Services Pty Ltd
Gibson, Libby
Gilmore, Craig
G irton Grammar School Ltd
Godfrey, Adrian
Grand Lodge of Victoria
Grimbos, Anita
Gruber, Maria
HCF
Hedger, Rachelle
Holman, Angela
Holmes, Russell
Hurley, Rebecca
Jet Couriers
Johnstone, Tanya
K iwanis Club of Cobram Barooga
Kornhauser, Shosh
Lavelua, Leaia
LeasePlan
Lindsay, Wendy
Luu, Kieu
Macgregor, Mark
M agistrates' Court of Victoria
Mamet, Belinda
McPherson, Kathy
Mediatec
Medibank
Mekhael, Emmanuel
M elbourne Storm Purple Hearts
Multi Direct
N ational Australia Bank Limited
Nelson, Matt
Nester, Sophie
N orth Footscray Football Club
N orth Melbourne Lodge
Novello, Matthew
On the Move
Palmer Financial
Parkville Store
P eople's Choice Credit Union
P errin Consultants Group Pty Ltd
Pharmasave Northcote Pharmacy
Pilkington, Chloe
P reston Motors Group Pty Ltd
Price, Matthew
Quartermaine, Jeremy
Quinane, Bianca
Ray, Paul
R EIV Charitable Foundation
R enfrew, Ronald & Kathleen
Richmond, Bill
Ritchies Stores
R otary Club of Greenvale
Shamrock Hotel
Signwave
Smith, Alan
S pecsavers - Altona Meadows
Specsavers - Brunswick
Star Pharmacy
Suncorp Group
Sutton, Kelly
Tang, Peter & Joyce
T asTAFE Client Services South
Terrill, Mark
The Art Cabriolet
T he Australian Cake Angels Network
T he Marian & E. H. Flack Trust
T he Walsh Family Charitable Gift
Wainstein, Taryn
Ward, Trudy
Woolworths
Young, Emma
Z Transport Group
Memorial Donations for
• Blake Gordon-Cooke
• Coco Du Chateau
• Kiara Shaye Ward
• Portia Grimbos
• Spencer Hayman
• Tina Nelson
Thank you for your recent gifts...
Financial contributions over $500 are acknowledged in this column.
Circus QuirkusOur families enjoyed watching another great show recently.
Our children just loved watching the talented Circus Quirkus entertainers.
Thank you to the Rotary Club of Preston and to the local businesses who supported this event.
Isaac Odd was inspired by his sister, heart child Emma, to raise money for HeartKids.
He organised a dinner party for his family and charged them to attend.
Isaac presented the proceeds of his fundraising efforts to Leah Askey-Doran.
Isaac's Donation
22
Sponsors and Supporters
Victorian Partners:
National Supporters:
Founding Sponsor
Principal Partner
Major Partners
Foundation Partner
Corporate Supporters
23
Diary DatesSaturday 8 November - 24 Hour Bike Ride
Sunday 9 November - FunFlight
Thursday 13 Nov - “Off the Cuff” Luncheon
Weekend 14-16 November - Tween Camp
Sunday 16 Nov - Broadmeadows Car & Bike Show
Sat 22 November - Super Santa at Broadmeadows
Sat 22 Nov - 'World Festival of Magic' in Melbourne
Mon 24 Nov - ‘World Festival of Magic’ in Bendigo
Thursday 11 December - Variety Christmas Party
Sunday 14 Dec - Christmas Party for Special
Children, at Moonee Valley Racing Club
Weekend 16-19 January - HKA Teen Camp 2015
Month of February - HeartKids Awareness
Thursday 19 February - SuperBoss Day
For more about these events check inside or go
to www.heartkidsvictas.org.au
Contact DetailsBairnsdale Caroline Foard 0438 928 821 [email protected]
Ballarat Rohini Dobell & Alan Smith 0407 851 648 [email protected]
Bendigo Natasha Prendergast (03) 5441 8262 or 0421 590 169 [email protected]
Cobram Bianca Quinane 0419 674 408 [email protected]
Echuca/Moama Tracey Hard 0438 962 056 [email protected]
Geelong Libby Gibson (03) 5250 2439 0411 057 905 [email protected]
Horsham Gaynor Baker (03) 5384 2280 [email protected]
Kyneton Lauren Roberts (03) 5427 2696 [email protected]
Mildura Fiona Dowie 0438 396 790 [email protected]
Portland Kerry Sluggett (03) 5523 2503 0418 312 320 [email protected]
Shepparton Cheryl Alexander (03) 5825 4005 [email protected]
South Gippsland Kerrie Disney (03) 5182 5531 0409 950 608 [email protected]
MELBOURNE METRO BRANCHES
Bayside Cassie Clarke 0499 741 116 [email protected]
East Bentleigh Maggie Stavrou (03) 9563 7133 [email protected]
Bundoora Amy Heafield 0421 518 366 [email protected]
Dandenong Lucy (Fatima) Hussain 0430 738 820 [email protected]
Melton Lauren Tyrrell 0424 594 757 [email protected]
Mornington Simone Munro 0439 033 194 [email protected]
Pakenham Joanne Arrowsmith (03) 5967 7083 [email protected]
Point Cook Jonathan Mackley 0411 114 008 [email protected]
Tullamarine Adele Luca 0408 312 662 [email protected]
Wantirna Janita Felici 0422 976 024 [email protected]
REGIONAL BRANCHES VICTORIA
Albury/Wodonga Cathie Kelly 0417 049 341 [email protected]
ARN: A0021470B ABN: 16 336 986 918
VISIT USSuite 310 / 55 Flemington Road North Melbourne 3051
HeartKids Vic IncCONTACT USPO Box 803 Parkville Victoria 3052
P: (03) 9329 0446E: [email protected]
Facebook: HeartKids Victoria/Tasmania
Twitter: @HeartKidsVicTas
Instagram: heartkidsvictas
www.heartkidsvictas.org.au
Stawell Leanne Amarant (03) 5358 2945 or 0419 864 412 [email protected]
Traralgon Chrissy Ades 0400 857 813 [email protected]
Wangaratta Lisa Dekeling 0421 655 636 & Shane Hack 0488 221 184 [email protected]
Wonthaggi Erin Howell 0431 702 863 [email protected]
TASMANIA
Burnie/Devonport Claire Gluyas 0408 351 661 [email protected]
Hobart Paul Hyland (03) 6247 8435 0418 561 504 [email protected]
Launceston Kylie Smith (03) 6393 6240 0448 983 587 [email protected]
SPECIAL INTEREST GROUPS
22q11 Audrey Cater (03) 9394 7965 0420 500 905 [email protected]
BEREAVED FAMILIES EMAIL SUPPORT http://www.hearts-of-hope.org/support/bereavment/intro.htm
CARDIOMYOPATHY ASSN of AUST. Website: www.cmaa.org.au/
DOWN SYNDROME Sam Jackson 0439 360 [email protected]
EBSTEIN’S ANOMALY Kathy Sims (03) 5831 1110 [email protected]
hearts4heart - Support for Adults with Heart Disease Tanya Hall 0426 240 636 [email protected] hearts4heart.net.au
HYPOPLASTIC LEFT HEART SYNDROME & SIMILAR CONDITIONS www.hearts-of-hope.org Leanne Amarant (Victoria) (03) 5358 2945 [email protected]
Csaba Ovari (Tasmania) (03) 6229 8169 [email protected]
KABUKI SYNDROME Stacey McKiernan (03) 5275 1542 [email protected] Website: www.sakks.org
KAWASAKI DISEASE Shirley Mates (03) 9894 1257 [email protected] Website: www.kdfoundation.org.au
LONG QT SYNDROME (LQTS) Sherrie McDonald 0431 544 510 [email protected] www.sads.org.au or www.sads.org.uk/
MULTIPLE BIRTHS April Schubert 0407 551 967 (02) 6056 6448 [email protected]
MUSLIM FAMILIES Lucy (Fatima) Hussain 0430 738 820 [email protected]
OVER 18’s Erin Cervelli (03) 9513 9030
PACEMAKERS Mandy Tichelaar (03) 9728 6984
