2 0 1 3 q l d a n n ua l m ag a z i n e
HEART SONGS From HeartKid to international country music and reality TV star – we speak to Mark O’Shea
in HER WORDS Faced with her daughter’s open-heart surgery, we hear how one mother got through the most trying days
...and more Ideas to help keep you occupied in hospital, the people behind the scenes, food, travel and upcoming events – it’s all in here!
HeartKids Qld CEO Anne Bannister
What’s on in the world of HeartKids Qld
Songs from the heart
The HeartKid from Dalby is all grown up
Add a little ‘heart’ to your life
He’s a cut above
Meet Nelson Alphonso
Lending a hand
Meet our Family Support team members
Meet Karen Eagleson
The HeartKids behind the organisation
In a mother’s words Diary of an open-heart surgery
Putting the ‘fun’ in fundraising How you can help
Making a difference We ask the questions, they share their answers Cover Brisbane-based HeartKid Milla Stecher, 3, just 11 days post-op after open-heart surgery. Photo by Dale Haberfield of Millbrook Studio
Starlight, star bright In memory of our Heart Angels
Food Eat your heart out, with Matt Moran
Publisher HeartKids Qld www.heartkidsqld.org.au Editor Belinda Glindemann, Belle PR www.bellepr.com Design Vanessa Russell, Raspberry Creative www.raspberrycreative.com.au Photography Dale Haberfield, Wendy Chung Contributors Anne Bannister, Rachael Stecher, Matt Moran
Travel Recharge the family’s batteries
The year that was 2012 in review
Things to do in hospital Boredom-busting ideas
Directory Add these useful numbers to your phone
Please note This magazine is fully protected by copyright and all enquiries should be directed to HeartKids CEO Anne Bannister for written permission to reproduce any material in full or in part. The publisher believes all information to be true and correct at time of printing. Editorial published in HeartBeat magazine is not to be construed as medical advice and readers are advised to consult their medical practitioners for advice. While every care has been taken in the preparation of HeartBeat magazine, no liability can be accepted for errors or omissions.
heartbeat magazine 2013
welcome hello and welcome to our first heartkids qld annual magazine! We have created this magazine as an annual publication for our HeartKids families, sponsors, fundraisers and volunteers. It is an opportunity for us to say a heartfelt thanks to everyone who supports the work we do here at HeartKids Queensland and to bring you relevant news and stories of interest – stories from the heart. For some of our readers, this may be your first interaction with HeartKids, as you may have just learned that your child has a heart defect. We want you to know first and foremost that you are not alone. HeartKids has been supporting Queensland families affected by childhood heart disease (CHD) since 1984. We have a range of support programs to help you, your HeartKid and your family throughout your CHD journey. We hope this magazine brings you hope and comfort. PHOTO: QUEST NEWSPAPERS
I wish to thank the many people who have contributed to the launch of this publication – our Board of Directors, our operational team, our volunteers, our corporate sponsors and supporters, the clinical teams at the Mater Children’s Hospital and Qld Paediatric Cardiac Services and our members. This magazine is dedicated to the four Australian children who sadly this week will die as a result of CHD. They and their families are my inspiration for working with HeartKids, so that we may create big bright futures for little broken hearts. Best wishes,
meet the qld team Anne Bannister CEO HeartKids Qld
connect with us Find out w ha t’s going on a t Hear tKids Qld via our website www.hear tkidsqld.or g.au or scan the QR code (left) with your phone to be taken s traight to the site. We are also on Facebook a t www.facebook.com/Hear tKidsQld and Twitter a t @Hear tKidsQld
04 heartbeat magazine 2013
$1 MILLION RAISED
FOR HEARTKIDS! From the bottom of our hearts, thank you for helping us reach this amazing milestone!
heartbeat magazine 2013
JOURNEY THROUGH HEARTACHE
For those parents new to the wor ld of childhood hear t disease, you may find solace in these words as you travel the road tha t all other Hear tKid parents have travelled before you WORDS: EMILY PERL KINGSLEY, 1987
I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this... When you’re going to have a baby, it’s like planning a fabulous vacation trip to Italy. You buy a bunch of guide books and make your wonderful plans. The Colosseum. Michelangelo’s David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting. After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland”. “Holland?!?” you say. “What do you mean Holland? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.” But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay. The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place. So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around and you begin to notice that Holland has windmills and Holland has tulips. Holland even has Rembrandts. But everyone you know is busy coming and going from Italy and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned”. And the pain of that will never, ever, ever, ever go away, because the loss of that dream is a very, very significant loss. But... if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.
what’s instore for 2013 Hear tKids Qld had a whale of a time celebrating our members and getting our message o u t i n t o t h e p u b l i c l a s t ye a r a n d 2 0 1 3 i s s h a p i n g u p t o b e a n o t h e r c r a c ke r. H e r e ’ s s o m e o f w h a t we a r e u p t o ( u s e t h e Q R c o d e s p rov i d e d t o a c c e s s m o r e i n fo )
mar - apr
BRONCOS CAMPAIGN LAUNCH
HeartKids Qld will again partner with the NRMA Brisbane Broncos for their 2013 season. Members can look forward to family events and media activities all helping to promote HeartKids Qld.
This premium off-road motorcycle experience will run from Boonah, Qld, to the Hunter Valley, NSW, and see 2500km travelled in 12 days. HKQ is the official beneficiary of this fullthrottle charity event.
GOLD COAST BULLETIN FUN RUN
BRONCOS GAME DAY
city to south
The Mended Hearts team (20 HeartKids, aged 5-10) will take to the Suncorp Stadium field at half time (Broncos vs Titans).
Twenty HeartKids Heroes will pull on their running shoes, raising funds and awareness for HKQ. Scan the QR code for more info or to register.
Some 25 HeartKids Heroes will have a gold entry start in the event while raising money for HeartKids Qld.
JUL 3 HeartKids Hamilton Island Golf Day This annual event is played in the picturesque Whitsundays.
CUPPA FOR HEARTKIDS
BRIDGE TO BRISBANE
During Aug and Sept we invite the community to host morning teas to raise funds and awareness for HeartKids. Scan the QR code for more.
Family Camp provides an opportunity for our HeartKids and their families to meet other families affected by CHD, participate in some activities and ultimately just have fun as a family. Date isTBC.
Join in the fun as the HKQ team competes in this iconic event. Walk for fun or run to compete. For more, scan the QR code.
corporate charity christmas cards
If your organisation orders cards for clients please consider our charity greeting cards as a percentage of each sale goes to HeartKids Qld. Cards go on sale this month.
toy Drive/FUN FLIGHT
The HKQ team raised $75,000+ in 2012. This year we aim to better that great tally. Funds raised go to our accommodation support program for regional families requiring services in Brisbane.
This event is truly the highlight of our year. The party is always a crowd pleaser with more than 300 members expected to enjoy a great day out.
We will call for donations of toys for under our hospital Christmas tree (see QR code) and will also hold our Fun Flight at RAAF, Amberley.
ANNUAL GENERAL MEETING We’d love to see as many of you there as possible!
heartbeat magazine 2013
08 heartbeat magazine 2013
songs from the heart If you have a newly diagnosed Hear tKid and are feeling as though life has handed you lemons , take a leaf out of Mar k O’Shea’s book. This adult Hear tKid has tur ned his lemons into a tall glass of sweet, sweet lemonade. Here’s cheer s to you, Mar k WORDS: Belinda glindemann
Mark O’Shea. Do you know the name? If not, let us tell you that he is an award-winning Aussie country music performer, now based in Nashville, Tennessee, who mixes regularly with the cream of international country music. He’s living his passion for music while working all around the world. He’s a reality television star, a husband and a father. And Mark is an adult HeartKid. Born in Dalby in the Darling Downs some 200km west of Brisbane, Mark arrived into the world suffering Tetralogy of Falott – one of the most common cyanotic heart defects, generally referred to as TOFs. In that era in the late 1970s, correcting TOFs traditionally involved a three-stage process with surgeries required just after the baby’s birth, again at age 7 or 8 years and finally at around age 15. Mark, however, was otherwise born a “big fat healthy baby” and was therefore a prime candidate to undergo the then-new procedure combining that three-stage process into one surgery. So, at age six months, he was one of the first babies in the Southern Hemisphere to undergo the radical new procedure. In what was surely an early indication of Mark’s impending stardom, the surgery saw baby Mark featured on the front page of The Courier-Mail newspaper under the headline “Who’s blue? Not Mark” (see photo on Page 10). Mark is the youngest of nine children. While he and his siblings have all grown up to work in completely different fields, including law, teaching, physiotherapy and retail (in the family business selling electrical goods in Dalby and Gundiwindi), Mark distinctly remembers his brothers’ and sisters’ shared love of music throughout their early years. While Mark says TOFs didn’t stop him from doing much as a young child, it was during his time in a “very rugby-focussed” boarding school in Toowoomba that he remembers his heart condition made him ‘different’. “Football was such a big thing at the school. My mum was particularly protective of me,” he recalls. “It was challenging at times, not being involved in footy. I remember being left behind for away games. It meant I became part of a different social crowd.” But when life hands you lemons, so you must learn to make lemonade.
“That’s when I really latched on to music. It was these experiences that crafted me into the artist I am today. “When you look at it like that, TOFs has had a positive effect on my life.” While his first musical instrument was the piano, taught to him by nuns at the local Dalby school, he quickly learned to play the guitar. And play it well. Mark won the Gympie Music Muster talent quest as a teenager which lead him to signing his first record deal with ABC/EMI at age 17. “As a kid I thought I was going to be a lawyer and even got into uni to study law. But I chose to be a slave to rock ’n roll instead,” he laughs. Through that first record deal, Mark saw “a little bit of success”. His debut album earned him two Golden Guitar awards from the Country Music Association of Australia including Best New Talent in 1996 and Best Video in 1997 but he “struggled with the confines of country music in Australia”. His was more of a contemporary country music feel, way before the Shania Twains and those Kasey Chambers of the world brought popularity to the same genre. In a natural progression, Mark started a band called Zinc with one of his brothers and a friend from Melbourne. Their pop-rockorientated sound scored them a record deal in Los Angeles. “We had a hit song in Australia for about two minutes,” Mark laughs, modestly. The song, The Morning After, reached No. 22 on the ARIA charts in 2004. > Continued on page 10
ONE FOR YOU
o’shea’s latest album One + One, features a TRACK dedicated to HeartKids Qld. it debuted at No.3 on the aria country charts. get your copy at JB HI-FI, SANITY, Big w OR on ITUNES
heartbeat magazine 2013
> Continued from page 09
While the group parted ways, within a few years Mark would be touring with United States celeb musician Ronn Moss, who may be better known among the female population as lead character Ridge from daytime soapie The Bold and the Beautiful. Mark even had one of his songs included on one of Ronn’s albums. Could life be any more awesome for the HeartKid from Dalby? Short answer – yes. When Mark was 19, he met fellow Aussie muso Jay Smith. They shared a love for music and eventually also a love for one another. However, their relationship was long distance for some time with the pair living separately in LA and London as they sought success for their respective individual musical careers. But the relationship was meant to be. In fact, two days before the interview for this magazine article, Mark and Jay celebrated eight years of wedded bliss (and some 16 years of togetherness). It’s enough to make you want to write a love song and sing it with your wife, right? Mark says it took him and Jay many years of casual gigging together to actually realise they had formed a duo. “In the early days we were both very headstrong with our ideas. We tried to write songs together but didn’t always agree,” Mark says. “As we got older, we got more mature about it and are now able to write together – as long as we have a third person as referee!” To add icing to the marital cake, Mark and Jay are proud parents to toddler daughter Finley and, in breaking news, also have another baby on the way (due in May, 2013). Mark says that while Finley was born free of any congenital heart defect and “perfect in every way”, they will closely monitor the unborn baby’s development in utero for any
signs of its father’s hereditary heart condition. Based in Nashville, Tennessee, for the best part of the past six years and enjoying a stellar musical career as the duo O’Shea (for the record, their debut album Mr and Mrs cracked Top 5 on the ARIA charts last year and they’ve enjoyed four consecutive No. 1 singles from the album on Australia’s Country Music Channel charts), the pair are also television stars. Of some 6000 duos to audition for the 2009 reality TV show Can You Duet (a show that sought out America’s next star country music duo) O’Shea finished fifth. Mark said some 2 million people tuned in each week and the show screened for two months on US TV. While fifth wasn’t an outright win, their ‘15 minutes of fame’ landed O’Shea an even sweeter victory – their own reality TV show, O’Shea USA, which screens on the Country Music Channel. Most recently, O’Shea invited a handful of HeartKids to appear in the video for the single Thank You Angels from their latest album, One + One. It’s a song about the everyday ‘angels’ whose job it is to selflessly help others. O’Shea has dedicated it to HeartKids Qld as Mark’s way of saying a heartfelt thankyou. You can watch the video at www.therealoshea.com/video While TOFs played a big role in his early years, Mark admits that he has experienced no problems with the heart condition throughout his adult life. He did, however, have to undergo a second open-heart surgery as an adult in Nashville two years ago to receive a new pulmonary valve. But he’s bounced back better and stronger than ever. If you know a newly diagnosed HeartKid who feels as though their condition will hold them back in life, please re-tell this story of lemons and lemonade and a boy named Mark from Dalby.
From left, Mark as a baby on the front page of The Courier-Mail in 1977, Jay and baby Finley, O’Shea onstage doing what they do best
w e b : S t a y i n t o u c h w i t h H e a r t K i d s Q l d a m b a s s a d o r s M a r k a n d J a y O ’ S h e a v i a t h e i r Fa c e b o o k p a g e a n d we b s i t e . Vi s i t w w w. t h e r e a l o s h e a . c o m a n d w w w. f a c e b o o k . c o m / t h e r e a l o s h e a
10 heartbeat magazine 2013
A l l H e a r t K i d s fa m i l i e s a r e b o n d e d by o n e t h i n g – t h e h e a r t . W hy n o t s u r r o u n d yo u r s e l f w i t h p ro d u c t s l i ke t h e s e t h a t r e m i n d yo u h o w s p e c i a l yo u r H e a r t K i d i s w h i l e a l s o b r i n g i n g s o m e s u b t l e l ov e i n t o yo u r l i f e
stockists 1. Freckleberry choc heart, $4 www.childrensdept.com.au 2. The Shape of my Love children’s book, $24.99 www.allenandunwin.com 3. Stamp set, $24.95 www.kikki-k.com 4. Organic cotton tote, $49.95 www.bozandlove.com 5. Gel pen, $4.95 www.kikki-k.com 6. Mimco Mayhem heart clutch, $149 www.mimco.com.au 7. Olive & Joy reversible diamond heart linen cushion cover (available in black or white print), $79 www.oliveandjoy.com 8. Kimochis nesting heart, $24.95 www.kimochis.com.au 9. Wooden block set, $14.95 www.kikki-k.com 10. Smallprint 20” cable necklace with three descending pendants featuring your children’s fingerprints, $540 www.smallprint.com 11. Fair trade Kisii soap stone hearts from Kenya, various sizes and prices, available at Mater Pharmacies including Level 2, Mater Children’s Hospital Brisbane
heartbeat magazine 2013
he’s A CUT ABOVE
As the Queensland Paediatric Cardiac Service’s director of surgery, Nelson is one of just 10 pediatric cardiac surgeons in the country and one of just three in Brisbane mending the broken hearts of little Queensland HeartKids. But don’t try to heap praise on this man’s lifesaving work.
W h at e v e r y o u r c h o s e n c a r e e r , w e a l l p l ay a u n i q u e a n d i m p o r ta n t r o l e in society. But imagine if y o u r j o b i n v o lv e d l i t e r a l ly holding a child’s life in your hands on a regular b a s i s . N o w t h at i s a r o l e for someone special… W O R D S : B e l i n da G l i n d e m a n n
“I’m just the product of the people who train me,” Nelson says honestly. “It’s simply the job I know and what I’m trained to do.” And it’s a job he says he thoroughly enjoys. On any given day, Nelson could be operating on a 600-700g premature baby. Its heart, he says, is about the size of that baby’s tiny fist – or a walnut. “Paediatric cardiac surgery is very challenging, very rewarding and the parents are so very grateful,” he says. “But there is no speciality under such scrutiny as paediatric cardiac surgery.” Nelson was born in Bombay, India. He studied medicine and completed his general surgery training there before embarking on a worldwide working adventure. Since 1995, he has lived and worked in New York, London, Melbourne, San Francisco and Liverpool before returning to Australia and making Brisbane his home in June last year. “We loved our time previously in Australia so Brisbane was a very attractive opportunity,” Nelson explained. “The weather here is very similar to India.” Nelson, 45, is dad to a seven-year-old daughter (“going on 17,” he laughs)
> Continued on page 13
w e b : H a ve yo u p u r c h a s e d yo u r H e a r t K i d s m e r c h a n d i s e ? T h e r e a r e t - s h i r t s , u m b r e l l a s , h a t s , c a p s , p e n s , l a p e l p i n s a n d m o r e . Vi s i t w w w. h e a r t k i d s q l d . o r g . a u a n d c l i c k o n ‘ H ow yo u c a n h e l p u s ’
12 heartbeat magazine 2013
PHOTO: WENDY CHUNG
Nelson Alphonso is a very modest man with a very important job.
Pure silver jewellery that captures special moments in time and keeps your special HeartKid with you all day long
heart beads HEART BEADS HELP ENRICH THE EXPERIENCE OF CARDIAC PATIENTS IN CHILDREN’S HOSPITALS AROUND THE COUNTRY. PATIENTS RECEIVE A DISTINCTIVE BEAD FOR EACH PROCEDURE, TREATMENT OR HOSPITAL STAY AND CAN THEN TRACE THEIR UNIQUE JOURNEY THROUGH THE STRING OF BEADS.
> Continued from page 12
and a three-year-old son. Funnily enough, his wife is an adult cardiac theatre nurse. There must be interesting and ‘heartfelt’ conversation over the dinner table between these two, right? “We don’t talk about work at home,” Nelson says. “We are too busy getting a word in around the kids anyway!” While Nelson’s work keeps him busy for long hours each day caring for the lives of other people’s children, nothing is more important to him than juggling commitments to maximize time with his own children. His is an extraordinary job and he still battles for work/life balance just like the small business owners and tradespeople and office workers and corporate high flyers. “It is a real effort. You have to be organised and have realistic expectations.” While Nelson is relatively new to Brisbane, he has been warmly accepted by HeartKids Qld. Nelson was one of the guest speakers at the recent one-day HeartKids Qld ‘Hearts and Minds’ seminar, for families affected by childhood heart disease. “It’s a great organisation – very, very helpful,” he says. “In my position, it’s very easy to get tunnel vision by being at the hospital and only hearing the professional opinions. It’s nice to have a different, more personal opinion (via HeartKids) as well.”
smallprint.com 1800 762 557 smallprint ANZ heartbeat magazine 2013
LENDING a hand
Angela Richardson Family Support manager (above right)
H av e y o u m e t a HeartKids Qld Fa m i ly S u p p o r t t e a m m e m b e r y e t ? Th e y are knowledgeable and supportive and t h e y w i l l p r o b a b ly be some of the best friends you’ll make
I began working for HeartKids Qld in 2011, delivering both in- and out-of-hospital support and programs to improve the lives of those affected by childhood heart disease. However, my personal HeartKids journey started when our son Kye was diagnosed with CHD at my 20-week pregnancy scan. After two healthy babies it was the last news we expected to hear. He has HRHS, TGA, ASD, VSD and a straddling TV valve. When Kye was nine months old, our cardiologist told us “I’m sorry there is nothing more we can do...” and he was given nine months to live. It was devastating news, but we never gave up. Kye started Year 2 this year and has never looked better. Working closely with families in the 8 East Ward and at regional clinics constantly reminds me of the strength and tenacity our HeartKids have. I am often invited to support parents during private moments and times of great stress, which is humbling and an honour. To provide support and practical information to these families gives me a sense of satisfaction few people could say they get out of their jobs.
Andrea Hyde Family Support coordinator (above left) My role is to support families going through their HeartKid’s operation/s, recovery, clinics and more. My HeartKids journey started with my son, Kellin, who had his first open-heart surgery for HLHS at three days of age in 2005. Since then, he’s had numerous surgeries, been on life support, lived for five months with a Berlin (artificial) heart and had a heart transplant, all of which required us to travel back and forth from our home on the Gold Coast to Melbourne, sometimes for long stints. I don’t know what I would have done without Tracy and Sherie from HeartKids Vic. They gave me so much hope. It was such a lonely time, but these two would stand beside me – not saying any words sometimes – just being there for me. There were fun times too when we would share morning tea and a laugh. Kellin is now a happy Year 2 student. My role gives me a way to return all the good karma I received in Melbourne. I am blessed to be invited by HeartKids’ families to be with them in the hard times.
Did you know? The Family Support team hosts morning tea for HeartKids and their families every Tuesday and Thursday at 8 East Ward, Mater Children’s Hospital, from 10am. Come along and make some new, likeminded friends
14 heartbeat magazine 2013
PHOTO: WENDY CHUNG
Twenty years in the one job is a monumental achievement. It shows loyalty, dedication, commitment and, simply, that you are good at what you do. This is Karen Eagleson to a tee. As one of a team of Cardiac Care coordinators within the Queensland Paediatric Cardiac Service, Karen will clock up 20 years of service this year. In that time, Karen has followed hundreds of HeartKids through their treatments, many of whom she met as newborns and who have since transitioned into the adult cardiac service.
For most Queensland HeartKids, chances are y o u w o u l d h av e m e t K a r e n E a g l e s o n . Sh e ’ s t h at wa r m a n d w e l c o m i n g fa c e t h at m a k e s h o s p i ta l s tay s a n d t r e at m e n t a l l t h e m o r e bearable. And she’s been doing it for 20 years W O R D S : B e l i n da G l i n d e m a n n
As a Cardiac Care coordinator, Karen’s job is a varied one. She plays the middleman between HeartKids’ families and the doctors or surgeons, provides support and education and, basically, is a familiar face to those parents in need. As it’s a statewide service, Karen can be found in regular regional outreach clinics, or at the other end of the telephone going through troubleshooting strategies with a parent. She works on the ward, helping HeartKids and their families adjust to hospital life, and she also works in the antenatal clinic with pregnant mums. “I have some really happy moments – like when a newborn has its first bath, or when they are ready to leave the hospital to go home,” Karen says. “But there are very sad times as well.” Karen says she has especially enjoyed her relationship with HeartKids Qld, sharing a mutual desire with the organisation to support affected families. “I can’t pretend to know what it is like to be the mum of a HeartKid, even though I have done this job for a long time, and that is why the role of HeartKids is so important. “The health professionals provide one side of the story – factual information at diagnosis and on prognosis, for example. And then HeartKids provides a different layer of support. As parents of HeartKids, they have personally walked the path.”
Did you know? Workplace giving is a simple, tax efficient way to donate to Hear tKids Qld. Donations are made from pre-tax pay, so the tax deduction is immediate and guaranteed. Phone 07 3847 7552 for details
heartbeat magazine 2013
We c o u l d n â€™ t l e t o u r fi r s t e d i t i o n o f H e a r t B e a t m a g a z i n e g o by w i t h o u t f e a t u r i n g s o m e o f t h e m a n y v i b r a n t fa c e s t h a t m a ke t h i s o r g a n i s a t i o n w h a t i t i s . We w i s h yo u , and all our Hear tKids, good health and happiness in 2013!
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web: To stay up to date with Hear tKids Qld make sure you subscribe to our monthly email newsletter at www.hear tkidsqld.org.au/whats-on/past-newsletters. You can also read our past newsletters on this page
16 heartbeat magazine 2013
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Did you know? About 1 in 100 babies are born with congenital heart disease. That is six babies every day across Australia â€“ more than 2000 per year. In the majority of cases, the causes of congenital heart disease are unknown
heartbeat magazine 2013
PHOTO: DALE HABERFIELD
18 heartbeat magazine 2013
in A mother’s words
I t ’ s h a r d fo r a n o u t s i d e r t o i m a g i n e t h e p a i n a p a r e n t g o e s t h r o u g h a s t h e i r yo u n g H e a r t K i d fa c e s o p e n - h e a r t s u r g e r y. O u r e f f e r v e s c e n t m a g a z i n e c ov e r g i r l M i l l a ( w h o wa s j u s t 1 1 d a y s p o s t - o p a t t h e t i m e o f t h e p h o t o s h o o t ) p r ov e s j u s t h ow q u i c k l y t h ey b o u n c e b a c k . H e r e i s M i l l a ’ s s t o r y, i n h e r m o t h e r ’ s ow n wo r d s WORD S : RACHAEL S TECHER
Ever since we found out on November 5, 2012, that our daughter Milla would have to have open-heart surgery I felt as though I was being pushed, kicking and screaming, towards something that I didn’t want to happen. Every part of me was shouting ‘This shouldn’t be happening’ but I was powerless to stop it. As a moderate control freak, I am happy to roll with what life throws at me. I have always felt somewhat in control of my life and, for once, I wasn’t at all. It is amazing how your mind works and, for me, the fear of the unknown was a powerful emotion that I wasn’t in control of. Milla, on the other hand, was excited to be getting her broken heart fixed. We have been very open and honest about what was going to happen to her and we have tried to prepare her as much as possible for the process – after all, knowledge is power. Her only request for while she was in hospital was that she got to have a ride in a wheelchair! Sunday, December 9 Today, the day before Milla’s open-heart surgery, we have been invited to a friend’s barbecue. We wanted to keep everything normal for Milla. We had a great time and it helped ease the panic that I felt. Monday, December 10 4.30am Early wake-up call today. We washed Milla’s hair and tried to keep her mind off food. I bought Milla a purple (her favourite colour) t-shirt from Lorna Jane earlier in the week that said “Little Miss Never Give Up”. This was to be her hospital outfit, along with a pair of denim shorts. The quote is highly appropriate for our little Milla, who is the most determined child I have met. The moment of truth was much harder for me than I thought. After watching Milla undergo four other minor surgeries in her time, plus having my eldest daughter, Addison, at the Mater Children’s Hospital earlier in the year with a perforated appendix, I thought I
would be prepared – but I wasn’t. To have to let go and trust that somebody else was going to look after Milla was the hardest moment in my life and was really quite confronting. I felt numb. 7.30am As I walked back to my husband Jacob, I felt sick. While Milla’s open-heart surgery was “garden variety” (the words of our cardiologist), anything and everything was possible. We were told not to stay in or around the hospital, so we didn’t. We went and had breakfast, although I didn’t eat very much of it, and to take up some time we watched a movie. I subjected my husband to Twilight which was mind numbing and exactly what I needed. It allowed me to have some respite from the thoughts that were running through my head. 11am We made our way up to 8 East Ward and chatted to Andrea Hyde (one of the Family Support Coordinators for HeartKids) until we got the call. They had moved Milla out of theatre and up into the Paediatric Intensive Care Unit. 1pm Everyone had told me to be prepared for what we were about to see – that it would be a shock and challenging but, for me, it was the exact opposite. Yes, there were wires, tubes, a breathing apparatus and beeping machines. But for us there was also a beautiful warm and fixed body beneath it all. It was a long day and night sitting by her bed. Milla was pretty drugged up so wasn’t conscious much. Tuesday, December 11 10am We were moved to 8 East Ward into Close Observations. Less tubes, wires and machines today. Milla was more composed, still groggy, but not in pain which was all that I cared about. I felt relaxed and
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started to feel a little like my old self although I have never felt so tired or drained in all my life. It is amazing how within such a short amount of time you can go from feeling complete terror to complete contentment. I was asked to leave Close Obs at about 9pm. One of the lovely nurses made a bed for me. I have never been so grateful. Even though it was a pull-out sofa bed in the parents’ lounge, I slept well. Wednesday, December 12 6am I woke to one of the nurses saying Milla wanted me. She was sitting up in her bed and had some of her usual colour back in her cheeks. The nurses wanted Milla to get up today. I thought they were crazy, but they insisted. Milla, in typical style, negotiated with one of the nurses that she would get up only if she was allowed to ride in a wheelchair. She got her way. Jacob came and went throughout the day, helping bring food to me and clean clothes while ensuring Addison felt loved and looked after on the ‘outside’. We had discussed how we would ensure Addison felt involved in the process and when was the right time to bring her up to the hospital. We felt today was the day. She handled it with a maturity and understanding far beyond her years. I am very grateful to have such a brilliant daughter. More tubes came out today. Later this afternoon,
Milla was asked to get out of bed and this time she had to walk. She certainly wasn’t sure about this but the physio insisted. To our surprise, once she got her balance, she was off. We played in the kids’ play room, walked around the ward and when I said she needed to get back into bed (I was having my own heart failure because she was so active!), she didn’t want to. Our little girl was back. Thursday, December 13 I was greeted by smiles and happiness today. The occupational therapist and physio showed us how to handle Milla and what she could and couldn’t do for the next eight weeks. It was another day of wire removal – the last of the bits and pieces sticking out of her. Any adult would find it hard to deal with all the poking and prodding Milla had gone through and yet she still allowed the nurses and doctors to do what they needed to do, even though she knew it would hurt. We were moved to the regular ward where I could sleep right next to her. Friday, December 14 Milla and I were determined we would go home today. Milla had recovered really well – better than anyone expected. The surgeons and cardiologist did their rounds and couldn’t see any reason for us to stay. So, four days after open-heart surgery, we went home! We were greeted at home by a beautiful ‘Welcome Home’ sign designed by Addison. This was the first day of the rest of our lives.
D I D YO U K N OW : H e a r t d i s e a s e i s o n e o f t h e m o s t c o m m o n b i r t h a b n o r m a l i t i e s . A b o u t h a l f of all the children diagnosed with hear t disease require surger y to correct the defect
20 heartbeat magazine 2013
putting the ‘fun’ in fundraising T h e r e a r e s o m a n y wa y s t o h e l p H e a r t K i d s Q l d c o n t i n u e o u r s o u g h t - a f t e r wo r k , b u t f u n d r a i s i n g i s o n e o f t h e m o s t i m p o r t a n t . Yo u ’ l l b e s u r p r i s e d by j u s t h o w f u n i t c a n b e !
There is an inner ‘hero’ that lies in all of us, that thrives on challenge and is motivated by achieving set goals. It is this passion that HeartKids Qld hopes to encourage through supporting individual fundraising efforts under the new ‘HeartKids Hero’ banner. Developed in 2012, HeartKids Hero is the name given to all fundraisers for HeartKids Qld and is also a website where these fundraisers can find ideas, share images and inspire one another. Each HeartKid Hero receives a profile on the site so it’s the perfect place for Heroes to send their supporters who are interested in making an easy online donation. HeartKids Qld uses the site to distribute tips and advice on how to achieve fundraising goals and HeartKids Heroes can also download posters and invitation templates directly from there. Among the fundraising superstars of 2012 was Michelle Langdon whose efforts around the Noosa Triathlon last year helped HeartKids Qld raise more than $75,000 from the one event alone. In 2013, big-ticket fundraising opportunities will surround the City2South, Bridge to Brisbane and Gold Coast Bulletin Fun Run. There will also be a HeartKids Qld team competing the Noosa Triathlon again this year. But don’t think you have to arrange a large-scale event to be a HeartKids Hero. Did you know just $50 can buy emergency in-hospital meals for a parent for a week while their child is in hospital and $100 can provide a night’s accommodation for a regional family in Brisbane while their child is in hospital? You could simply host a morning tea or a movie night at your house or even start an office fundraising challenge with prizes for
the person who raises most. The HeartKids Hero website provides tips for planning your fundraiser around themes like cooking, parties and sport, for example. One inspiring HeartKids Hero is Georgie Nowell, 14 (above). She is the big sister of HeartKid Ella, 8. “I have watched Ella go through three open-heart operations and being on life support not knowing if she’s going to make it,” Georgie says. “I know how hard it is for families, and the HeartKid, through these times.” Georgie decided she wanted to make a tangible difference and set about turning her passion for gokarting into a fundraiser for HeartKids Qld. She sent around some emails and before she knew it she had a sponsor (Bill McDonald and the MCG Group) and a new go-kart branded with the HeartKids logo. “I’m so excited to get racing for HeartKids. Now I finally have my own way to raise awareness. I urge other people to help HeartKids Qld like I have through their own interests and hobbies. It couldn’t be easier.”
W E B : T h e H e a r t K i d s H e ro we b s i t e c a n b e f o u n d a t w w w. h e a r t k i d s h e r o. o r g . a u . To b e p a r t o f a H e a r t K i d s Q l d t e a m a t a n y o f t h i s ye a r ’ s m a j o r f u n r u n f u n d r a i s e r s , v i s i t w w w. h e a r t k i d s q l d . o r g . a u
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MAKING A DIFFERENCE
There are so many amazing people associated with Hear tKids Qld (HKQ) for a va r i e t y o f r e a s o n s , e a c h b r i n g i n g a u n i q u e p e r s p e c t i v e t o t h e o r g a n i s a t i o n t h a t s u p p o r t s c h i l d r e n w i t h b ro ke n h e a r t s . F o r a l l t h e i r d i f f e r e n c e s , t h e s e p e o p l e a l l s h a r e a c o m m o n g o a l – t o s u p p o r t a n d s h a r e t h e i r l ov e f o r t h e s e l i t t l e fi g h t e r s
‘Top Hat’ Tony Maroney HeartKids Hero , D’Aguilar
PHOTO: CARLY HEAD
How are you affiliated with HKQ? I go out raising awareness and funds for them, tirelessly pounding the pavement, rattling my tin for donations. I’ve raised more than $40,000 in two years. What do you like so much about HKQ? I like the way everyone is like a great big family – always there for eachother and always willing to help. How do you feel when you see images of tiny HeartKids with a ‘zipper’ scar? It hurts me to see these poor lil’ ones who haven’t had a chance to have a normal life before having to suffer such trauma. What’s been your most memorable HKQ event of 2012? When I went to the hospital and got to meet some of the kids I am helping with my fundraising. It was quite a humbling moment. If you personally know a HeartKid, what would be your one wish for them? I really just wish them a long and fulfilling life and not to have to keep going through the endless doctors’ appointments and operations. They are such little heroes. Do you have any words of hope for newly diagnosed HeartKids? Be strong. You have the biggest network of people (HKQ) who will help you to the best of their ability. Have faith.
w e b : To fo l l ow To p H a t To n y ’ s f u n d r a i s i n g e f f o r t , o r t o s u p p o r t To n y ’ s wo r k f o r H e a r t K i d s Q l d w i t h yo u r ow n d o n a t i o n , v i s i t w w w. eve r y d a y h e ro. c o m . a u / t o p h a t t o n y
22 heartbeat magazine 2013
HeartKid, aged 17 , Cairns
HeartKids Qld patron, Brassall
HeartKid mum, Carina
How are you affiliated with HKQ? I’m a HeartKid myself. I was born with HLHS. What do you like so much about HKQ? I like that it is like a big extended family. I also love that HKQ is always there. I know that if I were to need anything, they wouldn’t turn me away which is amazing. What’s been your most memorable HKQ event of 2012? I have had the privilege to meet a few of the behind-the-scenes people from HKQ which has been truly amazing. Also meeting new parents here in Cairns for a morning tea was a lovely experience. If you personally know a HeartKid, what would be your one wish for them? I have one wish for each HeartKid and it’s just for their lives to be all that they want them to be. Do you have any words of hope for newly diagnosed HeartKids? I won’t lie and say it’s easy, because it’s not. It is a difficult journey. The people you meet and the love that surrounds you truly makes you feel like everything happens for a reason.
How are you affiliated with HKQ? HeartKids came to my attention through one of my fellow members of Ipswich City Rotary Club who had a child born with heart disease. I had no hesitation in accepting the role of patron. What do you like so much about HKQ? The support networks offered to families by the organisation, members and corporate sponsors. What’s been your most memorable HKQ event of 2012? The visit to RAAF Base Amberley. Getting up close to those giants of the sky was very special. All who attended enjoyed a memorable day on the base. If you personally know a HeartKid, what would be your one wish for them? That all kids continue to enjoy good health following their series of successful operations, and when they are old enough to understand, that they too become ambassadors for HeartKids. Do you have any words of hope for newly diagnosed HeartKids? Parents need to know they are not alone and support is always available. Medical advances are saving lives every day.
How are you affiliated with HKQ? My second child was diagnosed with CHD at my 18-week scan in 2009. Since then, I have undertaken fundraising activities for this wonderful organisation. What do you like so much about HKQ? The immense support offered by the Family Support coordinators at the Mater Children’s Hospital. They are a calming presence when you feel like your world is falling apart. What’s been your most memorable HKQ event of 2012? The Christmas party at Aussie World. It provided an opportunity to meet other families and foster new friendships. If you personally know a HeartKid, what would be your one wish for them? That all HeartKids have the chance to experience the joys and adventures of just being a kid. Do you have any words of hope for newly diagnosed HeartKids? Whether it is through the HKQ website, Facebook page or the Family Support coordinators, you have access to a wide range of knowledge and experiences. You’re never a stranger with HKQ.
Di d you k now? Hear tKids Qld began in 1984 and was or iginally a small group of parents meeting infor mally for suppor t. At the time, the g roup was called ‘Hear t to Hear t’ Cardiac Suppor t Group Inc
heartbeat magazine 2013
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w w w.saltcitycandle.com.au
HEARTKIDS MERCHANDISE We have a great range of merchandise that you can purchase to help those affected by Childhood Heart Disease.
07 3286 7667
HOW YOU CAN HELP US HeartKids Qld thrives on the support of the community. If you’d like to help us continue our important and life-changing work, here’s how...
DONATE Donate in memory, in lieu of a present on a special occasion, leave a gift in your will or arrange workplace/payroll giving FUNDRAISE HeartKids Heroes always have fun raising money and we’d love you to join in PARTNER WITH US Likeminded workplaces are always welcome. And remember our corporate charity Christmas cards this year MERCHANDISE Scan the QR code (left) for our merchandise order form
Scan QR code for our pricelist
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To find out more, call us on 07 3847 7552 or visit www.heartkidsqld.org.au
W h i l e t h e r e a r e m a n y, m a n y wo n d e r f u l s t o r i e s o f s u r v i va l , t h e fa c t i s t h a t c h i l d h o o d h e a r t d i s e a s e d o e s t a ke s o m e s p e c i a l c h i l d r e n a wa y f ro m t h i s wo r l d . N ow, t h e r e ’ s a r e a l s t a r i n t h e n i g h t s ky t o h e l p u s c o m m e m o r a t e t h e s e H e a r t
starlight star bright A n g e l s ’ s h o r t - l i ve d l i v e s
A Father’s Grief It must be very difficult To be a man in grief, Since “men don’t cry” and “men are strong”. No tears can bring relief.
Did you know childhood heart disease is one of the leading causes of infant death in Australia (that is, death in children under the age of 12 months)? Did you also know that around 250 Australians die of congenital heart disease each year? That is more than four people every week. HeartKids Qld CEO Anne Bannister says that while these facts are often quoted in HeartKids literature, the sad reality of these facts is that there will be many bereaved families within the HeartKids Qld community. “Just like other HeartKids’ families, these families need the support, encouragement and hope to continue long after their precious HeartKid becomes a Heart Angel,” Anne says. “Parents need to be able to say their child’s name and know they won’t ever be forgotten. Siblings need to be reassured that they are still welcome at HeartKids events. Anniversaries and difficult ‘special days’ in the calendar year need to be acknowledged.” To commemorate and honour all the Heart Angels, last year HeartKids Qld registered a real star in their name with the International Star Registry. It was registered on February 14 – international Childhood Heart Disease Awareness Day. The star was named ‘HeartKids Heart Angels Flying High’ and it can be found within the constellation Orion. “Grieving a child is not something you ‘get over’. You never get over the death of a child but you do need to adapt your life around the loss,” Anne says. “HeartKids Qld is here to support and give hope to bereaved families, so that they may be able to keep on living meaningful, though drastically changed, lives.”
It must be very difficult To stand up to the test, And field the calls and visitors So she can get some rest. They always ask if she’s all right And what she’s going through. But seldom take his hand and ask, “My friend, but how are you?”. He hears her crying in the night And thinks his heart will break. He dries her tears and comforts her, But “stays strong” for her sake. It must be very difficult To start each day anew. And try to be so very brave – He lost his baby too. – Author unknown
Reach for the stars The details of the ‘HeartKids Heart Angels Flying High’ star are filed in the International Star Registry’s vault in Switzerland. To learn more about our special star, scan the QR code, above.
D i d yo u k n ow ? H e a r t K i d s , w i t h t h e s u p p o r t o f i t s s p o n s o r s a n d d o n o r s , i s p r o u d t o h a v e c o m m i t t e d m o r e t h a n $ 1 , 5 0 0 , 0 0 0 i n f u n d i n g fo r r e s e a r c h p r o j e c t s l o o k i n g t o u n l o c k t h e m y s t e r i e s o f C H D
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things to do in hospital
W h e t h e r yo u a r e t h e p a t i e n t o r t h e p a r e n t , a s t a y i n h o s p i t a l c a n b e q u i t e t e d i o u s i f yo u d o n ’ t h a ve s o m e i n t e r e s t i n g a c t i v i t i e s o n h a n d t o p a s s t h e t i m e . T h e key i s t o p l a n a h e a d . D ow n l o a d p l e n t y o f e B o o k s a n d a p p s a n d p a c k s o m e f u n , h a n d s - o n a r t a n d c r a f t a c t i v i t i e s . H e r e a r e a f ew i d e a s . . .
books for kids and parents LOLs: BEST JOKES FOR KIDS By Mick Looby What must you be careful not to do when it’s raining cats and dogs? Step in a poodle! LOLs is a laugh-out-loud collection of jokes, riddles, rhymes and sayings from kids around Australia. Published by Allen & Unwin. eBook $9.99 ebooks.maryryan.com.au/collection/children
BIG QUESTIONS from little people Edited by Gemma Elwin Harris Children have a knack of asking great questions. Imagine if you could turn to an expert and ask them for the answers? This book does just that. More than 120 real questions from children aged 5-12 years, answered by experts such as Sir David Attenborough and Richard Dawkins. Published by Faber. eBook $11.95 www.angusrobertson.com.au/ebooks
The Mothers’ Group By Fiona Higgins This book tells the story of six very different women
who agree to regularly meet soon after the births of their babies. Set during the first crucial year of their babies’ lives, it tracks the women’s individual journeys – and the group’s collective one – as they navigate birth, motherhood and the shifting ground of their relationships with their partners. Published by Allen & Unwin. eBook $15.95 www.angusrobertson.com.au/ebooks
HARDMEN By Malcolm Andrews The ranks of rugby league around the world have been liberally peppered with ‘hardmen’. This book captures the unique spirit of rugby league with the greatest collection of ripping yarns ever published in a single volume. Published by Allen & Unwin. eBook $26.99 www.angusrobertson.com.au/ebooks
BLINKY BILL By Dorothy Wall Blinky Bill is one of the best-loved Australian children’s book characters of all time. Published by Harper Collins. eBook $7.99 www.angusrobertson.com.au/ebooks
w e b : C h e c k o u t t h e f u n p r i n t a b l e c o l o u r i n g - i n s h e e t s a n d m a s k s a va i l a b l e o n t h e H e a r t K i d s H e ro we b s i t e a t w w w. h e a r t k i d s h e ro. o r g . a u . C l i c k o n t h e ‘ R e s o u r c e s ’ t a b a n d s c r o l l d ow n t o ‘ D ow n l o a d s ’
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L SCHOO AY FUN HOLID avel issue T he tr
ADEE R DF
A E FRE
art AND craft SCHOOL HOLIDAY The colou FU N r issue
lotta magazine www.lottamagazine.com
• G TOY S URIN DMADE AY • COLO PL • HAN CRAFT • GAMES • G ART • IN • DRAW IT IES
ART • CR AF
TS • GAM
ES • ACTI VITIES
Australia’s first ad-free kids’ magazine, Lotta is released four times a year and is packed to the brim with hands-on art, crafts, games and activities for kids aged 5-10 years. At $10 per copy, this is one magazine worth its weight in gold! Check out the website for even more boredom-busting activities on the Lotta blog.
seedling www.goodthingsforkids.com Seedling products are not only inspiring and educational, they look great too. With dozens of activity kits tailored to boys and girls as well as other stationery and fun play stuff, there will be something here for every child’s interest and every parent’s budget.
handy apps South Bank Pocket Guide www.visitsouthbank.com.au/download-our-new-app South Bank Pocket Guide App is packed with the best info on what to do, where to go and other exclusive offers at cosmopolitan South Bank (which is walking distance from the Mater Children’s Hospital). Search under Food + Drink, Shop + Indulge, Arts + Culture and more.
Web Child www.webchild.com.au/web-child-app-demo
If you’re looking for ways to entertain the kids, or planning a stay in Brisbane, try Web Child’s Calendar App. It includes a calendar and city guide, activities in 12 categories, venues and directions, or you can get random inspiration via the ‘shake’ function.
TOYOTA PLAYGROUND www.thestickerfamily.com.au/view/myapps This app lets creative kids play their fave games with the My Family sticker characters, made famous on the windows of cars all over the country. With five interactive activities, kids can create, problem-solve and have fun with characters based on members of their own family.
D i d yo u k n ow ? H K Q Fa m i l y S u p p o r t t e a m m e m b e r s a r e o n h a n d a t t h e M a t e r C h i l d r e n ’ s H o s p i t a l t o h e l p ke e p t h o s e l o n g d a y s i n t e r e s t i n g w i t h f u n g a m e s a n d a c t i v i t i e s a n d o t h e r o r g a n i s e d ev e n t s
heartbeat magazine 2013
Eat your heart out J u s t a h o p, s k i p a n d a j u m p f ro m t h e M a t e r C h i l d r e n â€™ s H o s p i t a l yo u w i l l fi n d A R I A a n d R i v e r b a r & K i t c h e n , t wo a m a z i n g e a t e r i e s r u n by c e l e b r i t y c h e f M a t t M o r a n . We e n c o u r a g e yo u t o c r o s s t h e r i ve r a n d v i s i t o r, w hy n o t t r y t o r e c r e a t e a l i t t l e b i t o f M o r a n m a g i c a t h o m e w i t h t h e k i d s ? W O R D S : M at t M or a n
Lamb kofta This is a great dish to serve for lunch in Summer with a Greek salad and fresh pita bread
Serves 6 Ingredients 1 cinnamon quill 2 teaspoons coriander seeds 2 teaspoons cumin seeds 1 teaspoon ground ginger 2 teaspoons salt 1 brown onion, peeled and finely diced 3 cloves garlic, peeled and finely sliced 50ml olive oil 600g lean lamb mince Âź bunch parsley, finely sliced 50g pine nuts, toasted 50g Japanese breadcrumbs 6 skewers, presoaked 1 lemon cheek 6 tablespoons tahini
Method Place the cinnamon, coriander, cumin, ginger and salt in a frypan and heat gently until the seeds start to pop and release their flavour. Transfer the spices into a mortar and pestle and grind to a fine powder. Heat a little olive oil in a small saucepan over low heat and sautĂŠ the onion and garlic for about 10 mins until slightly translucent. Stir in the spice powder, mix, cook for a further 5 mins. Remove from heat. Cool. Place the lamb mince in a bowl with the spiced onion and garlic mixture, parsley, pine nuts and breadcrumbs and mix together until all ingredients are combined. Divide the mixture into six portions and mould each portion around the skewers. Place the lamb skewers over a hot grill or barbecue for 10 mins, turning every couple of minutes to ensure they are cooked evenly. Serve with lemon cheeks and tahini.
w e b : Yo u c a n fi n d M a t t M o r a n o n F a c e b o o k a t w w w. f a c e b o o k . c o m / c h e f m a t t m o r a n o r v i s i t h i s we b s i t e s a t w w w. a r i a r e s t a u r a n t . c o m a n d w w w. r i v e r b a r a n d k i t c h e n . c o m . a u
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Buttermilk pancakes with fresh berries Serves 6
Need to grab a quick, decent bite or a hot cuppa while based at the Mater Children’s Hospital? Here are our picks of the best s h o r t - wa l k o r s h o r t - d r i ve cafes and restaurants
Ingredients 3 eggs 2 cups buttermilk 60g butter, melted 300g plain flour 1 teaspoon bicarbonate of soda 200g strawberries
120g raspberries 120g blueberries 300g ricotta 120ml raspberry puree 60ml maple syrup icing sugar
Cafes Desmond and Molly Jones 615 Stanley St, Woolloongabba 07 3162 5797 Open weekdays 7am-4pm Clarence Corner Bookshop 596 Stanley St, Woolloongabba 07 3844 5591 www.cornerbookshop.com.au Open weekdays 5.30am-2.30pm The Little Prince Espresso 8 Annerley Rd, Woolloongabba 07 3391 4658 www.littleprinceespresso.com Open weekdays 5.30am-2pm, weekends 7am-noon Jacob’s Well Café Mater Children’s Hospital, Level G 07 3163 8662 Open weekdays 7am-5pm Restaurants Vespa Pizza 617 Stanley St, Woolloongabba 07 3391 4300 www.vespapizza.com.au Open Tues-Sun from 5pm, also Friday lunch noon-3pm Hana Sushi 551 Stanley St, South Brisbane 07 3010 5799 Open weekdays 10.30am-8pm, weekends 11am-8pm
Method Carefully separate the eggs and beat the egg yolks well. Whisk in the buttermilk and melted butter. Sift the flour and bicarbonate of soda into the egg mixture and fold together. Just prior to cooking the pancakes, whisk the egg whites to a soft peak and then carefully fold into the batter. Heat a lightly greased, heavy based frypan and ladle in enough batter to form a pancake of your desired size. Cook until bubbles form on the top side and then flip over and cook the other side until golden brown. Cut the strawberries into quarters and mix in the blueberries and raspberries. To serve, layer the pancakes with the berries and ricotta, place more berries on top and drizzle the raspberry puree and maple syrup around the stack. Finally, dust with icing sugar and serve.
The Plough Inn Little Stanley St, South Bank 07 3844 7777 www.ploughinn.com.au Mon-Thurs 11am-10.30pm, Fri-Sat 10am-midnight, Sun 10am-11pm Ben’s Chinese and Vietnamese Restaurant 14 Annerley Rd, Woolloongabba 07 3391 3233 www.bensrest.com.au Open seven days, lunch 11am-3pm, dinner 5-10.30pm
DID YOU K NOW? ARIA is a t Eagle Street Pier, Br isbane (07 3233 2555). Riverbar & Kitchen is a t Ripar ian Plaza, 71 Eagle St, Br isbane (07 3211 9020). Check the respective websites for opening hour s
heartbeat magazine 2013
RECHARGE and reconnect North Stradbroke Island, just a short ferry trip from Brisbane’s bayside, offers a perfect family GETaway to help recharge the batteries W O R D S : B e l i n da g l i n d e m a n n
What does your version of paradise look, feel and smell like? If it looks like a white sandy shell-covered beach, feels uber-relaxing and smells like salt air, then North Stradbroke Island is paradise. Whether you’re a Brisbanite, or visiting Brisbane from elsewhere around the state, the island affectionately known as ‘Straddie’ is quite simply, easy. Getting there is an easy (and fun for kids) 45-minute ferry trip in your car from bayside Cleveland, or an even shorter water taxi ride if you plan to utilise public transport at the other side. You can spend your time doing nothing at all, or everything from guided tours, four-wheel driving, scenic walks, scuba diving, snorkeling, surfing, swimming and fishing, to beach yoga, café-hopping, boutique shopping and whale watching. Accommodation choices on the island are wide and
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suit all tastes, budgets and levels of adventure seeker. Camping is popular and can be enjoyed in easy-access campgrounds boasting all the required amenities or, for those visiting in four-wheel drives and looking for adventure, you can also camp in a secluded section of wilderness among the trees along Flinders Beach. For easy, self-contained accommodation options, your first decision is which of Straddie’s three main townships
you want to set up house in. Point Lookout is a popular choice for tourists, but the hidden gem is Amity Point. Amity Point remains uncommercialised and has that true sleepy fishing village vibe that oozes relaxation for busy families. True, there is only one corner store and one café/restaurant but that’s all you need – a place to buy magazines and iceblocks and chinwag with the locals, and a place to grab real coffee. Sorted. You can also purchase the freshest seafood, including prawns direct from the trawler, oysters, crabs, bugs, fish and loads of other goodies, at Rufus King Seafoods just down the main drag. A stay at Amity Point is not complete without a sunset walk along the jetty (dolphins are regular visitors here) or a spot of fishing. Bream and squid can easily be caught from the jetty or anywhere along the rockwall – there are many public access points to fish from the wall if you aren’t staying in your own waterfront holiday house. Koala spotting and lazy afternoons on Amity Beach are also popular holiday activities for families. In fact, you will probably spend a lot of your time on Amity Beach.
Straddie Sales Rentals offers year round holiday accommodation to suit families, couples and friends
+ linen/towels, minimum 2 night stay
incl. linen/towels based on 2 guests
NT DISCOU ES R A F BARGE ERY V E WITH G BOOKIN
Choose from our extensive range of affordable classic cottages, holiday homes, units, absolute waterfront properties or pet-friendly accommodation. Imagine fishing from your own backyard, bathing in the sublime colours of the sunset, watching playful dolphins or mingling with the local koala colony. We are an island-based business providing guests with accurate, first-hand information about North Stradbroke Island. Whatever your needs, you can be sure that our friendly, helpful service will ensure you enjoy your stay.
With brilliant white sand and shady trees, the beach is closed to all four-wheel drive traffic so you don’t have to worry about the cars around your kids. It’s dog friendly, offers small waves perfect for the littlies and it is also a shell hunter’s paradise. And when wet togs and rubber thongs are standardissue uniform for getting about Amity Point, paradise is well and truly found.
4 Ballow Street, Amity Point
Ph: 07 3409 7126 or 0458 097 126
heartbeat magazine 2013
The year that was W h a t a ye a r 2 0 1 2 wa s fo r H e a r t K i d s Q l d ( H K Q ) ! F r o m t h e f o o t y t o t h e a i r fo r c e , we d i d i t a l l . H e r e ’ s s o m e o f w h a t w e g o t u p t o. . . WO RDS: H ea r tKi ds Q ld CEO Anne B anniste r
HKQ reps joined the Mater Children’s Hospital and Qld Paediatric Cardiac Services team in celebrating the lives of Heart Angels at the annual bereavement service. Families in attendance received a HeartKids Star, to forever remember their angel. Other Awareness Month activities included our HeartKids Rock & Roll Ball, which was a great success and saw many people grooving to the fabulous sounds of the ’50s and ’60s.
We launched our first ever Queensland TV commercial in partnership with the Brisbane Broncos. Our ‘Mending Hearts’ campaign drew attention to the plight of children born with congenital heart disease and included a feature story on Channel 9’s The Footy Show, articles in various newspapers and culminated in a game day appearance by a team of HeartKids who had the once-ina-lifetime experience of playing a game of football on the hallowed turf of Suncorp Stadium during half time of the Broncos vs Manly Sea Eagles round.
March 2012 HKQ made a presentation at the Ashgrove Rotary meeting. If you would like someone from HeartKids to speak at your local community group, please contact us.
April 2012 Players from the Brisbane Broncos joined football legend Wally Lewis (above right) and the Easter Bunny to visit our HeartKids on the 8 East Ward at the Mater Children’s Hospital. Kevin Rudd MP (himself an adult HeartKid) was appointed a HeartKids ambassador and launched a TV commercial in support of our organisation.
In other news this month, HeartKids outdoor posters started appearing across Brisbane thanks to corporate supporter JC Decaux, new TV, video and gaming equipment was installed on the 8 East Ward, the mural commenced in 8 East playroom and our first ever First Aid Awareness workshop was held in Townsville, in conjunction with HeartKids attendance at the Townsville outpatient clinic.
June 2012 HKQ visited Cairns outpatient clinic and held a First Aid Awareness workshop and morning tea for parents.
July 2012 Eight wall-mounted activity centres were installed in the consulting rooms and a single free-standing activity
centre was installed in the waiting area of the Queensland Paediatric Cardiology outpatient clinic at the Mater Children’s Hospital.
August 2012 Our community fundraising platform HeartKids Hero was launched this month, enabling members of the community to fundraise for HKQ with ease. We also enjoyed a visit by country music sensation and HKQ ambassadors O’Shea to the 8 East ward (see Mark O’Shea’s story on Page 8). HKQ held a First Aid Awareness workshop and outpatient clinic visit to Rockhampton and an outpatient clinic visit to Mackay.
September 2012 Our first ever Family Camp was held at Mount Tamborine on Father’s Day weekend and saw families enjoy the great outdoors with a range of activities including archery and high ropes, plus night time trivia. The 2013 Family Camp will be held
w e b : C h e c k o u t t h e ‘ H i s t o r y ’ p a g e u n d e r t h e ‘A b o u t U s ’ t a b o n o u r w e b s i t e t o s e e t h e o t h e r m i l e s t o n e s t h ro u g h t h e ye a r s t h a t h a v e h e l p e d s h a p e d t h e o r g a n i s a t i o n w e a r e t o d a y
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in September 2013 – numbers are limited, so make sure you subscribe to our email newsletters to be first to register when applications are called for.
October 2012 The annual HeartKids Education Day was held in Brisbane this month. This is a one-day seminar for families affected by CHD and featured presentations from some of Australia’s pre-eminent researchers
November 2012 Some 55 triathletes and their support crews competed in the HeartKids Noosa Tri team in the 30th Anniversary of the Noosa Triathlon festival (right). An amazing $75,000 was raised by these HeartKids Heroes! Our lucky HeartKids and their families also got up close and personal with Air Force aircraft and equipment at the annual Fun Flight event, hosted by the RAAF Base Amberley’s Number 36 Squadron (left).
and clinicians regarding CHD research, treatment outcomes and models of care. Whilst numbers were low due to the inclement weather, the HeartKids Queensland AGM and barefoot bowls event was also held this month at Greenslopes Bowls Club. Hopefully more members will be able to make it along to the 2013 AGM, to be held in December 2013 (date and venue TBA). HKQ held a Gold Coast First Aid Awareness workshop and also visited the Townsville outpatient clinic.
On December 2, just over 170 HeartKids and their families (totalling close to 300 people) attended our annual Christmas party at Aussie World on the Sunshine Coast. A great time was had by all. They enjoyed the park as well as Miss Donna the clown, face painting and lunch. It was a great opportunity for many families to meet each other and share the common bond of having to deal with children with heart conditions, giving reinforcement they are not alone. All the kids had such a fun time, as did the adults.
January 2013 Twelve teens and 10 volunteers from Queensland attended the annual HeartKids Teen Camp in regional Victoria (below). Some 79 teens from across every state and territory of Australia enjoyed an activity-filled four days including a giant swing, flying fox, low ropes, reptile education, yabbying, an ‘op shop’ ball, bush cooking, trivia night and marshmallows by the campfire.
We also had a HeartKids Christmas party in Townsville on the same day with just over 60 HeartKids and their families attending. We would like to thank all the local businesses who contributed to making it such a fun day for our kids and their families, and especially to our volunteer Petrece who did an amazing job of coordinating the day for us.
D i d yo u k n ow ? 2 0 1 2 s a w t h e a p p o i n t m e n t o f a n a d d i t i o n a l Fa m i l y S u p p o r t c o o r d i n a t o r t o e x p a n d o u r i n - h o s p i t a l s u p p o r t t o fi ve d a y s p e r we e k ( u p f r o m t h r e e d a y s p e r w e e k )
heartbeat magazine 2013
heartkids QLD directory
Hospitals For emergencies call 000 Mater Children’s Hospital Phone 07 3163 8111 (switchboard) Raymond Terrace, South Brisbane, Qld 4101 Visiting hours are from 7am-7pm Mater Children’s Hospital 8 East (cardiac ward) Phone 07 3163 7573 or 07 3163 7576 Queensland Paediatric Cardiac Services (Outpatient Clinic) Phone 07 3163 1667. Level 4, Mater Adult Hospital. Cardiac Care coordinators, phone 07 3163 7108 The Prince Charles Hospital Phone 07 3139 4000. Visit www.health.qld.gov.au/tpch
travel Patient Travel & Accommodation Assistance – Mater Health Services Phone 07 3163 2325 Fax 07 3163 2326 Email firstname.lastname@example.org Ask for a copy of the latest “Accommodation and Facilities Guide” when you contact Patient Travel. This brochure will give you a list of accommodation providers within walking distance of the Mater Children’s Hospital. Queensland residents Government financial assistance for Qld residents who have to travel long distances is called ”PTSS”. Visit www.health.qld.gov.au/ptss New South Wales residents Government financial assistance for NSW residents who have to travel long distances is called ”IPTAAS”. Visit www.health.nsw.gov. au/transport/Pages/default.aspx
MensLine Australia Phone 1300 78 99 78 (24-hour line) or visit www.mensline.org.au Playgroup Queensland Phone 1800 171 882 or visit www.playgroupqld.com.au Poisons Information Line Phone 13 11 26 Pregnancy, Birth & Baby Helpline 24-hour national line, providing confidential information, support and counselling. Phone 1800 882 436 SANDS (QLD) Inc. Stillbirth and Neonatal Death Support Group (including Miscarriage Support). Phone 1300 072 637 or visit www.sandsqld.com SIDS and Kids 24-hour bereavement support, infant safe sleeping info, Mon-Fri 9am-5pm. Phone 1300 308 307 or visit www.sidsandkids.org The Compassionate Friend Bereavement service. Phone 07 3254 2585 or visit www.compassionatefriendsqld.org.au Women’s Infolink Resources, information and links to services available to women and girls. Phone 1800 177 577 or visit www.women.qld.gov.au
Adolescent Services Kids’ Helpline Phone 1800 55 1800 or visit www.kidshelp.com.au
a big tha nk you to ou r par tne rs QUEENSLAND PARTNERS
Community Services Australian Breastfeeding Association Phone 1800 686 268 (helpline) or visit www.breastfeeding.asn.au Department of Families, Housing, Community Services and Indigenous Affairs (FaHCSIA) Phone 1300 653 227 or visit www.fahcsia.gov.au Centrelink Visit www.centrelink.gov.au Counselling Service Phone 1300 30 1300 or visit www.parentline.com.au Kidsafe Queensland Phone 07 3854 1829 or visit www.kidsafeqld.com.au Lifeline Phone 13 11 14 (24-hour crisis line) or visit www.lifeline.org.au
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Proudl y suppo rting
HeartK Queen ids sland www.jameshomeservices.com.au