Spring Garden Tour

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HeartKids announces new major sponsor - Retail Food Group

RFG franchisees hope to raise a significant amount over the next 12 months from tasty HeartKids Combo’s and customer donations.

Up to $1 from each HeartKids Combo will be donated to HeartKids – a charity devoted to supporting children and their families affected by Childhood Heart Disease and funding much-needed research. The HeartKids Combo varies between the RFG brands and include:
• Donut King: A regular coffee and heart donut
• Michel’s Patisserie: A small coffee and heart cupcake or heart lamington
• Brumby’s Bakeries: A sandwich loaf and four heart cupcakes
• Brumby’s Go!: A regular coffee and heart slice
• bb’s cafe: A small coffee and heart muffin
• Big Dad’s Pies: A pie and heart lamington

HeartKids is Australia’s only charity solely focussed on the needs of children and their families affected by Childhood Heart Disease (CHD)

“Awareness of CHD has been one of our greatest challenges”, HeartKids Australia CEO, Mr McWhannell said.

“People and even governments are unaware CHD is the most common birth abnormality and greatest killer of young Australians. Most people think it’s cancer, yet Childhood Heart Disease takes twice as many lives and more than all other childhood diseases combined”.

RFG’s sponsorship gives HeartKids a fantastic boost towards providing full-time family support to heart kids and their families across the country. Presently our resources only allow for part-time Family Support Coordinators in each of the major children’s hospitals and as a result many families, especially those in regional Australia, receive very little if any support.

Mr McWhannell said that RFG’s support will also help HeartKids advocate for more research in to the causes of CHD, including directly-funded research projects.

“We’ve been overwhelmed by the support for the HeartKids cause from the whole RFG ‘family’ of corporate management, franchisees and staff”, Mr McWhannell said.

“All 1100 stores are displaying donation boxes and brochures on their counters to help assist raise awareness and financial support for the joint initiative. It’s marvellous.”

“They have made the future brighter for thousands of HeartKids and their families across Australia.”

“We extend a heartfelt thanks to RFG and all the franchisees for this generous and significant level of support.”

Cuppa for HeartKids

Please visit www.cuppaforheartkids.org.au to register and learn more about this great, fun activity.

You will also find lots of downloadable resources to make your event a special one, along with numerous celebrities who have endorsed the campaign and provided their favourite recipe for you to taste.

Dilmah Tea has kindly donated the tea samples that are included in the registration packs.

Have fun and we thank you very much for your support.

A Tiny Call for Help

Heart kid of the Month

Our Journey through Crispys first 11 months – as told by his mum Kelley Caoyonan

Crispin Cade Caoyonan arrived on 21st April 2009. A day filled with fear and excitement.
After a long time trying to conceive we were finally pregnant with our 2nd child. We had agreed that I would go for our routine 20 week scan by myself as things were crazy at work for Alvin and we assumed it would be all great. Why wouldn’t it be?

Everything was looking good and I said to the Sonographer “ looks like baby is holding a bubble” she informed me that it was in fact the umbilical cord and that she could only see one umbilical artery and she couldn’t locate the right kidney. Initially I was shocked but with my knowledge of anatomy and a lot of research we thought “ well many people survive just fine with one kidney” no worries.
We went to our obstetrician appointment with high hopes that he would confirm what we thought. His response was not exactly what we were looking for and he told us that we would need a 26 week scan because sometimes these things can occur in clusters. HUH?
Needless to say the Christmas period and the 6 week wait was agonising. I could feel this little life growing inside of me but was completely rattled by not knowing was going on inside. Finally our appointment came around. We were taken into the first room and the 2 ladies were very upbeat and joked with us. Crispy was quite the mover inside and it was difficult to get a good view of all of him. She did her best and the best views were of the heart back hands, she kept saying … well there’s the heart again…. it’s beautiful. We finished with that scan and were told to wait for the obstetrician . We thought “ sweet, nothing else discovered … single kidney placenta previa grade 4 ….. We can deal with that .
In comes the obstetrician – a man of few words and he set about scanning me again. He didn’t say much and we joked about Crispin being a wriggler , but hey you can get a good look at the heart! He said “ I see it and there is a hole in it and there is irregularities in the spine , can’t find the right kidney and I didn’t see the hands opening” WHAM!! I went numb, what did that mean, are you sure?? Surely you haven’t looked properly. He looked at us and said it looks like your baby could have trisomy 21 / 13 or 18. At that moment we looked at each other, what the hell had just happened? He left the room, I broke down . I said to Alvin , we are not leaving here without having an amnio, he agreed. When the obstetrician came back in we said what we wanted and he informed us that they don’t like to do multiple procedures on the one day. We made it clear we weren’t leaving until it was done. After the amnio we asked the doctor is there a chance these are all unrelated and could each be fixed. He mentioned VACTERL Association which was exactly that, but said tests would let us know what we were facing.
VATER syndrome or VACTERL association is a non-random association of birth defects. The reason it is called an association, rather than a syndrome is that while all of the birth defects are linked, it is still unknown which genes or sets of genes cause these birth defects to occur, if any.
The next 3 days were the worst days I have ever lived through. I was 26 weeks pregnant and had been told that my baby would die at birth, die at 15 months or have Downs Syndrome and the severity of disability unknown. I hate myself for the thoughts I had, I just didn’t want to be pregnant anymore. I feel terrible about the rollercoaster of emotions that Crispin had to deal with. I was unable to function. The phone call on day 3 could not come quick enough, the tests were clear but he said once again that we don’t know what we are facing until the baby was born. We labelled him “doom and gloom” and never went back. We went to our normal obstetrician in Murwillumbah, who told us that apart from the anomalies there was nothing wrong with our baby’s intellect and these anomalies could be fixed and he sent us to the Mater Children’s Hospital, Brisbane.
We will be forever grateful to the foetal medicine clinic and its fantastic doctors and midwives who took over our care, delivered the same news but in such a way that we started to see that things were going to be ok. We were in for a journey and a huge learning curve but we were up for it. VACTERL Association was the diagnosis.
It was here we meet the awesome Dr Cameron Ward, our cardiologist. A doctor with a sense of humour and we instantly liked him. He looked at us and said “ Tetralogy of Fallot… fixable.” We said “choice”
We knew Crispin would start life with a series of hurdles but he would be ok, and we prepared ourselves to help him.
Because of my placenta previa and Crispy’s issues we had to relocate from our Byron Bay home to the Ronald McDonald House (RMH) 6 weeks before the birth, amazing for us and our 4 year old who was so happy because there was a playground inside! We lived cosily in that house.
April 21st came it felt very surreal walking across to give birth. In the back of my mind doom and glooms words “we don’t know what we are facing” repeated in my head. There were a lot of people in that delivery room ….ITS A BOY!! Important to note that we never found out the sex of the baby, we knew so much about the baby we needed one surprise. He was awesome and I said to my husband “count his fingers and toes” 10 of each ( funny what’s important?!) He was whisked away and up to NICU.

When we were wheeled by to see him, the cardiologists were looking at his heart. They said, Tetralogy of Fallot (TOF) but he has great statistics and would be fine to wait for surgery, although he needed immediate surgery to connect his oesophagus to his tummy
(another defect in the VACTERL Association) He pulled through that surgery like a trooper and we were off home in 2 weeks. We were comfortable with his heart condition and we were over the moon to take our little guy home, who apart from needing some things fixed, was perfect. One week later Crispin did a massive breath hold, couldn’t get air in and turned blue in my arms. We were choppered up to the Mater Children’s Hospital to spend the next 6 weeks trying to figure out what was going on. We became part of the furniture and bounced between the PICU and the ward. I kept a bedside vigil afraid to leave him and my husband and 4 year old went between RMH and the hospital. As a family we did our best to care for Crispin. We became very familiar with the beeps, the rounds, the doctors, the plans, the nurses, and the handovers. A repetitive cycle that was broken up by watching Crispin turn blue and struggle to breathe, have to be masked every few hours. He was getting tired and we were frustrated at seeing no end in sight, the plan was just wait, not a great one for us. Finally completely exhausted and struggling to recover from his more frequent episodes we were moved back down to intensive care. It was here that one of the PICU (Pediatric Intensive Care Unit), doctors worked out that Crispin’s oesophagus has constricted to the size of a pin hole and he was effectively aspirating – dilate this and problem fixed. We were off home.
4 months later it was time for Crispin’s heart repair. He had been going so well and if you didn’t know better you would never suspect a thing, the choice was ours and we decided to go for it , we wanted control over it rather than wait for problems to arise. We felt very comfortable being at the hospital, we had frequented the cardiac close obs every time Crispin had a dilatation so we were well known and it gave us a little sense of relief.
November 12th 2009 .The single most hardest thing we have had to do was hand Crispin over for his operation. Myself , Alvin and Crispys big brother Jonah kissed him goodbye and went to wait the 5 ½ hours out. Every shadow that came into the parents lounge made my heart jump. Finally the amazing DR KARL walked in, with my stomach in my throat he said all went well, although the next sentence “ the next 24 hrs are critical” shook my resolve.

We walked in to see our boy- amongst all the tubes he looked so calm , I cried for him, sad that he had to go through this and wished it could be me instead. We stayed with him constantly, played him music, stroked him and allowed him to rest and recover. Like Dr Karl had told us after the first 24 hrs he would follow a live of recovery. On day 5 we were off home! It is amazing to watch the recovery, Crispin’s repair had gone extremely well. He is a wee lad but is a mighty strong wee lad and as a family he has taught us that life can throw lots of stuff at you , but you can bounce back and smile.
8 weeks post-operation we had our first check , all looked good although the pulmonary valve had a leak (apparently very common in TOF repair). My heart sank a little , wishing he would only have to endure that operation once.
You don’t know what the future holds for any of your children, you only pray it’s full of good things. We feel lucky in a way to have been through what we have been through and we feel our family has been tested and we came out fighting. We are blessed to have this boy in our family. We are sure with the progression in technology that Crispin’s future is very bright.

We are forever indebted to the doctors, surgeons, nurses, social workers, pastors, anaesthetists, cleaners, starlight room, lollipop radio, RMH, HeartKids (HK), HK Family Support Co-ordintor Sylvia, and all the amazing parents in hospital at the time who helped us through one hell of a ride!

Please support gorgeous Crispin and the Caoyonen family by assisting HeartKids with their work

Cooper Maywald – as told by his mother Bronny Maywald

It was the 28th of July when my husband Steve and I found out that we were expecting our first baby. It had only been about 3 months since our wedding and we were so excited about starting our family. Everything with the pregnancy seemed to be going as expected and we couldn`t wait for our twenty week scan to see our little baby for the second time. I could have watched that monitor all day, we were so happy; it was as if everything was perfect. I treasure that memory, when our baby appeared healthy, that short time before our world was tipped upside down. The rest of the day was a blur. We were told that our baby had something wrong with his/her heart; that the right side was too small and the flow through the pulmonary valve was restricted. We left the hospital with only this information and a date in two weeks time to see a cardiologist. We tried so hard to remain positive until we had a diagnosis, but our next scan with cardiologist Terry Robertson confirmed our fears. Our baby was diagnosed with Pulmonary Artesia and Hypoplastic Right Heart. His pulmonary valve had now closed completely; the pathway that would supply blood to his lungs when he was born. Even with surgery, our baby`s heart would never function properly and he would tire very quickly. We were given the option of termination but just couldn`t bear not giving our little angel a chance to fight for his life. I remember sitting on the curb of the hospital that day feeling like the world had turned against us. How could this happen? What had we done wrong? Our baby didn`t deserve this, he wasn`t even given a chance to be healthy. That was all we wanted.
I tried to enjoy the rest of my pregnancy as much as possible but it was very hard. We had regular check ups and scans at the hospital, and our baby’s growth was quite slow. We were assured that while he was still inside me that he would be safe as my body supplied him with oxygen. It was after birth that all the complications would begin. How could I be excited about welcoming our baby into this world? We were to fly to Melbourne for the first of three open heart surgery`s within the first week of our baby being born. Until his surgery he would be closely monitored in ICU and given a medication that would keep a duct open and allow blood to flow from the left side of the heart to his lungs (this duct normally closes after birth). The staff from The Women`s and Children`s Hospital were fantastic and I knew that our baby was in very good hands.
On the 25th March 2009 I was induced. I was so excited and so scared. I knew I could no longer protect him when he was born. After a long labour that failed to progress, our little man ‘Cooper Jax’ was born by emergency caesarean on the morning of March 27. He came out screaming and it was the most beautiful sound in the world. We were able to hold our little angel for a short 5minutes before he had to be taken away. Steve was able to go with him while he had tests taken and was started on the medication. Cooper then had to have an operation known as a Balloon Septostomy, which created a larger opening between the right and left side of the heart. All this before he was one day old. It just seemed so unfair that his life should begin this way, he should be feeling safe in the arms of his Mummy and Daddy, and instead we could barely hold him. I was afraid he wouldn`t even know us.
We went to visit him as much as we could in ICU. I had to be pushed in a wheelchair to the other side of the hospital to see him which meant I was unable to be there whenever I wanted. I was still in a lot of pain from the caesarean. Apart from the tubes and monitors he looked like such a healthy little boy. I began trying to breastfeed him when I could and expressing to encourage my milk flow. When Cooper was 4 days old he was flown to Melbourne by the Royal Flying Doctors Service. He was admitted to 7 West and booked in for surgery. I was attempting to feed Cooper every 3 hours but he was really struggling to find the energy, so he would then be fed via a nasal gastric tube and I would continue to express. It was very stressful and time consuming, I hated leaving his side. We were very lucky to have the support of our wonderful families who travelled to Melbourne with us.
Cooper was just one week old when he had his open heart surgery. I`ll never forget how I felt as I kissed my tiny little boy goodbye and watched him disappear through the big doors ready for the operation. Words cannot describe it. The next 4 hours felt like forever, waiting for the phone to ring. Finally we received a phone call from Coopers amazing surgeon, Igor Konstantinov. He said that the operation had been a success and that we were able to come and see him as soon as he was settled into ICU. We were ecstatic to hear that our little boy was ok and rushed straight to the hospital to wait. Nothing could have prepared us for what we were about to see. Cooper`s tiny little body was so lifeless as he lay completely covered by tubes and bandages. He was hooked up to so many different machines. There was a massive oxygen tube down his nose that was breathing for him. We couldn`t even hold his little fingers as they were covered too. And yet we were so relieved, he had made it through the toughest part and was now on the road to recovery.

Everything appeared to be going well until Cooper’s oxygen levels began to drop not long after being admitted to ICU. He was suddenly surrounded by nurses and doctors’ trying to figure out what was wrong. It was agonising leaving him again, so unsure of what was happening. We waited. We then received a second call from Igor. Our little fighter was ok. He had had fluid build up around his heart, putting pressure on his new shunt and therefore restricting the oxygen flow to his lungs. They had to re-open his poor little chest to relieve the pressure and put in drain tubes to clear out the fluid. His chest was to be left open until the swelling had gone down enough for it to be safely stitched up again. The next morning they were able to do this and Cooper maintained his levels.
Three Days after Coopers surgery, we were finally able to hold his little fingers again. The pain killers and sedatives were being reduced, but Cooper took a long time to respond and his progress was slow. Finally, on the fourth day after surgery we came in to see two little wandering eyes looking up at us. Not long after that the oxygen tube was removed. That night Cooper was moved back up to 7 West. We were so proud of our little boy; he had made so much progress.
Over the next few days, the tubes were slowly removed, it was so exciting to see them disappearing and to be able to cuddle our little man again. I was still expressing 3hourly and overnight, as Cooper was struggling to breastfeed but I persevered. I really wanted to have that connection with him as I felt as though I had missed so much already. The days were up and down but all in all Cooper was recovering well. He got an infection in his chest wound but once on medication that seemed to clear up well too. We spent our first year anniversary in Melbourne. We never imagined that in a year’s time we would be sitting here, by our little boys bedside, watching him fight for his life.
On the 15th April (two weeks since we arrived), we were flown back to Adelaide and re-admitted to Women’s and Children’s Hospital. We spent another week and a half trying to establish Coopers feeding before we were finally able to bring him home for the first time. Cooper was exactly one month old. It was the best feeling in the world. We finally had our little baby to ourselves.
The months that followed were very stressful and time consuming. Cooper was very underweight and we tried so many different options without success. He struggled to keep his fluids down and constantly appeared to be in pain. We felt so helpless and struggled to keep up with the everyday demands and the lack of sleep. My day consisted of demand breastfeeding (whenever he would take it), then topping him up with formula and breast milk via his nasal gastric tube. I was then expressing every three hours to keep up my milk and to supply enough breast milk for his continuous feed overnight through the tube. It was almost impossible to leave the house and we felt very restricted. But Cooper was our priority and eventually he began slowly putting on weight. At 5months he was able to have the nasal gastric tube removed. For the first time in his life he was just Cooper, no strings attached.

Cooper is now 10 months old. It has been a very difficult journey and Cooper has been put through so much. Understandably, he is quite an unsettled baby and has found it hard to maintain routines. He is still under weight, but since starting solids, has flourished and now looks like such a healthy little boy. We are so proud of every little milestone that Cooper has conquered and although he is a little behind physically, he is learning new things everyday. We are due to go back to Melbourne for his second operation at the end of February. It`s hard to imagine what it will be like a second time round, we will know what to expect but Cooper will be so much more aware and I think it will be even harder this time to leave his side. We know that it is just another obstacle we have to go through and that, like all the hard times we have endured, it will be worth every minute. We are so grateful for our little angel, he is our world.
We would just like to say a huge thankyou to HeartKids SA and the amazing ongoing support they have given our family. They have definitely made this journey easier and have helped us realise just how much hope there is for Cooper`s future.

Please support Cooper and the Maywald family by assisting HeartKids with their work

Rosemary Gill – our butterfly – as told by her Mother Amy.

This is a very special, but sad story that highlights the short life of little Rosemary Gill. Sadly not all children can be saved at this point of time and little Rosie is one a several hundred each year who still succumb to CHD. Amy and Andrew invite you to share their journey and celebrate the life of their precious daughter.

When I found out I was pregnant we were elated. My first pregnancy, resulting in our now three year old Annabelle, was trouble free. However, within a couple of weeks we found out that this time would be different. At 8 weeks I experienced some bleeding. I went to see my obstetrician and he took a look. He could see two sacks, but only one heart beat. He sent me immediately for a full ultrasound. At this ultrasound it was discovered that I was having twins … there was two heart beats and I breathed a sigh of relief … but then I was told that one of the two was much smaller and the doctor told me that when I would come back for my twelve week scan not to expect two heart beats. My little baby would most likely die as there were significant issues there. We began the grieving process that day, the day we should have been celebrating the fact we were having twins.
At 12 weeks we tentatively attended our next scan. I was scared. Part of me knew my baby was still alive, but I was trying not to get my hopes up. Both Andrew and I were stunned when once again the sonographer told us there were two heart beats. Maybe we would have two babies. At the end of the scan we were taken to a doctor’s office for ‘the verdict’. The doctor told us that although there were two heart beats, our little baby probably wouldn’t make it to birth. She said she thought it had Trisomy 18 or Trisomy 13. When we asked what that meant she said we shouldn’t read about it as it would upset us, but told us that it wasn’t good. She then went on to explain to us that she would be considering termination now to minimise our grief. She would just put a needle in, stop ‘the fetus’s heart and if I was lucky I may go onto carrying the larger twin. We stared in disbelief at this woman who had decided (with no confirmation that our smaller twin had a Trisomy) that we should end the pregnancy. We felt like we had been hit head on by a speeding train. My thought was “This doesn’t happen to us, this happens to other people.”
We went home that day to absorb all this information. We went against her advice and read everything we could on Trisomy 18 and Trisomy 13. The stories of children with these diseases broke our hearts. We decided that no matter what our baby had, we would give her a go. She already had proven she was a fighter. We did want to know what we were dealing with though so we could prepare ourselves as much as possible for what was to come. We went back a week later for a follow scan and a closer look at baby 2. This is where we first heard that there may be a problem with the heart, but it was too soon to confirm this. We had a CVS to find out whether she did have one of the Trisomys. The wait for the results was agonising. “Hello …. Sorry? .. Nothing? It’s all clear??? Are you sure?” That’s right, all clear. She didn’t have Trisomy 18 or 13 or even 21 and she was a she! We were over the moon and began to hope that everything would be ok.
We went for another scan at 18 weeks. We chose to go elsewhere for this scan and saw Professor Morris at the Foetal Medicine Unit at RNS. He was brilliant. At this scan we found that there were still some major problems. We were told there looked like there was a hole in the heart, a small VSD. Our baby was still growing though and we still hoped. A hole in the heart can be repaired right? It could be worse; it could have been Trisomy 18. At 20 weeks, we came for another look. We were told that it didn’t quite look like just a hole in the heart, but something more complicated. They weren’t a 100% sure so we were sent to Dr Sholler at Westmead for a closer look.
Dr Sholler had a look for some time. We waited in anticipation for his response. He told us that no diagnosis could be accurately given until the baby was born, but the problems were significant. He explained briefly but said it was difficult to understand the full scale of problems unless you were a cardiologist due to the terminology. He told us a baby would most likely need surgery when she was born and a number of times throughout her life. He told us she would always be on medication. He said she had about a 75% chance of survival. She had a chance of survival and we held onto this. We went away and a week later we got our hands on his letter to the obstetrician outlining our baby’s heart problems. We took that letter, went home and researched all the terms, drew diagrams of the heart, and read the latest research so that we fully understood what our daughter would be dealing with. His initial diagnoses included a hypoplastic right ventricle, large VSD (basically no septum), pulmonary stenosis, small tricuspid valve, and transposition. (Turns out he was exactly right.)
When we were researching what all this meant we stumbled onto HeartKids. I sent an e-mail to Karen and she responded with a lot of information. She was very supportive. I went along to a morning tea at the children’s hospital as part of my need to prepare myself as thoroughly as possible for what was to come. I was welcomed by Kim and Jenny and many of my questions were answered. I met some beautiful families, parents and babies and heard of their trials and successes. I went home full of hope and courage. If these other mothers could do this, so could I.
A few weeks later, 35 weeks into my pregnancy, a scan showed that our little baby had stopped growing. I was admitted to Westmead for close monitoring and was there a week before it was decided that it was time. I was petrified. It was explained to me that anything could happen in surgery – that my baby may be blue, may need working on for some time, and may not make it. I tried to stay calm and prayed to anyone that would listen that I would get to hold both my baby girls.
At 8.15am on Tuesday 24th March, Penelope Jane and Rosemary Kathleen were born. Penny came out screaming and weighed 2.5kilos. She was on CP AP for one hour before being taken to Special Care at Westmead. She was healthy and home in 3 days. Rosie wasn’t crying when she was born. Her AGPAR was 4 but progressed to 8 with some work. She weighed a small 1.37 kilos and she was alive! My little heart baby had beat all the odds. Not only had she made it past 12 weeks in the pregnancy, she had made it to this world. As they took her to Intensive Care the stopped briefly beside me and I knew by her strong grip that she had a lot of fight in her.

Rosie continued to fight for the weeks following her birth. The staff at Westmead Children’s Hospital, (nurses, neonatologists, registrars, cardiologists, support staff, everyone!) were amazing. Rosie had her good days and her not so good days. At first everyone was surprised how despite her complicated heart issues, it still all worked! Rosie had a temper and hated the nurses prodding her. One nurse described her as a stubborn little thing. And she was. She was tiny, but very alert. She looked like a little pixie. We were able to hold her, tell her we loved her, bath her, change her nappy and even feed her. She would sleep next her sister and together they looked like two perfect dolls.
Unfortunately, as the days progressed Rosie did not grow and her sats dropped lower and lower. Her pulmonary stenosis was tightening. On the 16th April, Rosie was taken to the cath lab so a balloon catheter could be inserted. Although no one is certain what went wrong, she didn’t make it. We believe that the delicate balance her heart was treading on was thrown out as soon as it was touched. This was the hardest most difficult day of our lives.
On the day of her funeral we released 24 butterflies, one for each day of her life. Annabelle, our three year old, believes that Rosie’s body stopped working and she became a butterfly:
“A butterfly lights beside us like a sunbeam, and for a brief moment its glory and beauty belong to our world: but then it flies again. And though we wish it could have stayed, we fell so lucky to have seen it.” (Author Unknown).
So here we are a few months later and I can sit here and write this and say that I am the luckiest person alive. I feel truly blessed – blessed because I had 24 days with my beautiful heart kid Rosie. We were told she wouldn’t make it to the birth. We were told we should terminate. But here we were able to hold her, love her and do the things regular parents would do with their babies. She got to meet her sisters and spend time with them. She has also taught us so much. In her short life she was able to teach us not to take the small things for granted, to appreciate every hug, smile or conversation you have, to live your life to the fullest and to never give up. She gave us strength and courage and she has made us better parents.
We are also blessed to have met amazing people – such as yourselves at HeartKids and the doctors and nurses we met along the way. You work tirelessly to better the lives of others and we are truly thankful. That is why we want to give something back to you. Last Saturday we hosted a ‘Cuppa for Kids’ and raised $850 for HeartKids which we have included in this letter today. We also have been pledged another $150 which I am still waiting on, but when it comes I will immediately send it through.

Amy with her beautiful girls, Penelope and Rosie
We want to thank you for your love, support, beautiful flowers you sent after Rosie’s passing and for the wonderful work you continue to do. If we can do anything to assist HeartKids please do not hesitate to ask.
With much thanks and love,
Amy, Andrew, Annabelle and Penelope.

Please support Amy and Andrew in celebrating the life of Rosie. They have requested donations go to helping HeartKids address the many needs of CHD

Chelsea Mason. Our Heartkid: Chelsea as told by her mother Kate Mason

Having 2 girls already, we were pleasantly surprised to find out our 3rd planned pregnancy was twins, and yes, 2 more girls! Our world soon began tumbling down when one of our twins was diagnosed with a very complex set of heart defects, at my 26 week ultrasound. My only worry was if my little girl would be here for the long term as I loved her already.

We were referred to the Women’s and Children’s Hospital Cardiology department, in Adelaide, for follow up. A very thorough echo was performed and we were able to meet with Cardiologists, Clinical nurses and social workers in the weeks leading up to the birth. The information we obtained from Cardiology did give us some reassurance that our little girl was more than likely going to survive and have a good long term outlook. This helped prepare us for everything that was likely to happen. I spent many late nights scouring the web for everything I could find. It was all consuming. I then decided to record our journey. Somehow writing it all down was good therapy and looking back, it has been valuable to read about everything Chelsea and our family went through.

We were told her heart condition was reasonably complex. Our little twin b (as she was called in-utero) was diagnosed as having double outlet right ventricle, a large ventricular septal defect and critical pulmonary stenosis. I recall thinking this was a whole lot of things for one tiny little baby to deal with.

Chelsea and Amelia
Finally the day came for the twins to be born. They were delivered by planned c-section with so many people present in theatre it felt like a stage show! We had the head of paediatric neonate intensive care, paediatricians and nurses for each of the twins, aneasthesia staff and the theatre team along with my husband Jeff and my obstetrician. The delivery went well with Amelia born first at 2.2kgs and our little heart baby Chelsea arriving two minutes later at 2.1kgs. She was reasonably blue, but we expected that to be the case. They were checked over and Chelsea was taken for an echo, then to the intensive care unit for the prostaglandin to be commenced. This was the drug that would ensure her duct would remain open until she could be transferred to RCH Melbourne for a shunt procedure. For the next week, Amelia roomed in with me in hospital (a very easy baby, thank goodness!) and Jeff looked after the other two children at home. We all shuffled back and forth between my hospital room and intensive care to see Chelsea. It was overwhelming for our big girls with mum not at home, two new sisters one of whom was surrounded by complex monitoring systems. We did our best to normalize everything for the girls and keep our brave faces, but inside we were pretty fragile.

Chelsea holding her mummy’s hand
Chelsea was on the small side for heart surgery and it was decided that she would be kept in Adelaide until she gained weight. All good in theory but on day 5, complications started when Chelsea was diagnosed with an infection in the bowel, which, as we were to discover would require operations in the future. This often affects preterm babies, particularly those who are unwell from other conditions and where oxygen to the organs is compromised. As she was critical we were asked to stay very close to the hospital in case they were developments. We were told that although it had been detected very early, it could go either way. My own frantic research on the web discovered that babies have a 50% chance of survival. Oral feeds were stopped and she was administered massive doses of antibiotics to try and stop the condition. It was these unexpected extras that were horrifying. She may have done ok with her huge heart hurdles but we were well aware that other complications could come and destroy our hopes & dreams without warning.
Needless to say, there were so many mixed feelings about that time. We were totally besotted with both our new little babies but also absolutely distraught with worry about how Chelsea would handle all of the challenges she had in front of her.
Over the next week, the bleeding in her bowel stopped and she began to improve. The medication had worked!

Around 2 weeks, Chelsea started having heart racing episodes. After a few tests and lots of observation, it was concluded that she had an arythmia. More medication was required and within a week of adjusting meds and doses, her heart started to behave more consistently.

The journey continued with more steps back & then eventually forward. We were starting to become accustomed to life with a sick child. By the beginning of February, Chelsea had managed to gain weight and was ready to go to Melbourne.

Chelsea arrived in Melbourne with the Flying Doctors around the same time as us and was sent off for surgery the very next day. That was the darkest few hours of our lives – WITHOUT A DOUBT – EVER! We had no idea whether our beautiful daughter, who we had never taken home, held properly in our arms without tubes & beeping machines etc, would ever wake up and come out of heart surgery alive. It was so distressing and I felt like I was going to pass out or have a heart attack myself with the pain of leaving her with the surgical team.

Anyway, we dragged ourselves away and tried to keep ourselves distracted by getting some grocery shopping done – we had a family to feed!
After what seemed an eternity we got a call from the surgeon to say that the procedure had been successful and that we could see her in paediatric intensive care unit in one hour. The relief was unimaginable! We went down to see her but were kept waiting for over 2 hours. At one point a nurse came rushing out to tell us that there had been some emergency complications and they were having to re-open her chest right there in the intensive care unit. Our hearts sank. We honestly thought were about to lose her. About half an hour later, we were told to come and see her and that she was fine. We were told her shunt had formed a blockage and that they did indeed have to re-open her chest to remove the blockage. When we entered her little chest was still open, but covered with film. The surgeon told us that the next couple of hours would tell us whether or not the operation was successful. Thankfully Chelsea managed to get through that next couple of hours and it looked as though everything was going to be all right. Relief again! What a rollercoaster!

Chelsea after surgery
When we went in to see Chelsea, she looked almost unrecognisable. Her face was bloated, swollen and bruised. Her chest was still open with a wound drain hanging out. I was overwhelmed to see so many lines hanging out of her little arms and feet, along with numerous beeping machines and monitors including the ventilation unit. We felt so many emotions. We really felt for our tiny girl, who had already had her chest opened twice and had all these tubes and machines keeping her alive. I kept having flashes of losing her and thinking she may not live a life with her other 3 sisters. All the while, we sat holding her little swollen hands, tears of happiness streaming down our cheeks, thankful that at least she had made it through this first heart surgery.
The next few days, Chelsea raced ahead and amazingly got clearance to fly back to Adelaide on day 5! She returned to the Women’s and Children’s Hospital. She needed to recover and of course she still needed her bowel fixed. Unfortunately Chelsea soon took a few steps backwards. She showed signs of being unwell a few days after returning from Melbourne. She was very pale, almost grey looking. She had developed some sort of gastro bug and started going downhill very fast. Our cardiologist said the surgeon was pessimistic about the upcoming scheduled bowel surgery, but would review the case in the morning.

When we arrived in the early hours of the next day, Chelsea looked much worse. The surgical team came to review her and the head of surgery told us the surgery would be postponed and that he thought she looked ‘awful’! Before too long, the cardiology team arrived as did the team of intensive care doctors. Orders started flying around and a flood of nurses swarmed over Chelsea’s bed. The consultant in charge ordered an immediate blood transfusion, fluids and two broad spectrum antibiotics. I remember thinking we had just about every available person in intensive care attending to Chelsea in some way.

Next the results came back from her echo only to reveal a cyst type mass on the outside of the heart. Another more thorough echo was ordered and the cardiologist’s early diagnosis of the ‘thing’ was a pericardial cyst. Treatment would need to be carried out in Melbourne, presumably resection or drainage. By this time we had almost had enough. Our poor little darling had really been put through the wringer. It seemed there was an ever increasing number of hurdles she was having to jump. When would it stop?
As the week progressed, Chelsea improved in spirit, but her belly was really playing up. It became quite distended and hard lumpy bits of her bowel starting showing through her tummy. All the while, the surgeons were on standby for emergency surgery. Over the weekend she improved and surgery eventually went ahead. Once again we had to leave her with the surgical team. Lots more tears. We waited and waited, trying to distract ourselves. Eventually the surgeon phoned to tell us that a large stricture on the right side of her bowel had been successfully removed. The two ends had been rejoined and she had been stitched up. Our little girl was now the proud owner of 2 big scars but she had made it!

Chelsea was soon transferred to the ward and eventually, on day 65, we were able to bring our baby girl home for the first time. It was a magical day, particularly for our older girls who were desperate for our whole family to be together again.
The next few months were very demanding, with 4 children under 3, but blissful for us all to be at home together. We were totally sleep deprived but felt truly blessed. After nine months of regular visits to Cardiology Clinic, we were referred to Melbourne once again for further surgery. Our emotions soon started to spiral out of control once again as the fears of surgery were contemplated.

The day soon arrived and we all headed off to Melbourne. Two grandmothers, 4 children, Jeff and I flew to Melbourne where we had to rent two apartments. Unfortunately, due to a shortage of intensive care beds and nurses, days turned into weeks as we waited and waited. This was incredibly stressful, as Chelsea had her surgery cancelled 4 times! Finally a lengthy bypass surgery was performed, which all appeared to go well. However little Chelsea didn’t respond as well as everyone would have liked. Her heart, whilst repaired, was not functioning well. We were told this was not uncommon after a major surgery as a swollen heart and lengthy bypass surgery can cause the heart to take a little while to work correctly. As a result they decided to re-open her chest to take some of the pressure off! Oh not again!

Over the next week Chelsea made a few baby steps forward each day and after a long week in intensive care, she was finally transferred to the ward before returning to Adelaide a few days later.
It was so good to be home. Chelsea had a hard time recovering over the following weeks. Naturally, she had pain in her chest. Slowly she improved and today you just wouldn’t know by looking at her the many trials she has had to endure. How these heart kids get through these immense ordeals inspires, amazes me and overwhelms me.

Lately there has been some concern over her pulmonary artery. Her surgeon and Adelaide cardiologist have said that she may need more surgery but this will depend on how her heart grows and develops.

For the moment, she is home and we are ready to celebrate life for a while!

Today, Chelsea has turned the corner. She is well and developing both emotionally and physically. She is not yet crawling, but is finally sitting up. Her cardiologist anticipates she won’t need further surgery for at least 2 years! Furthermore, we don’t even have to attend cardiology clinic for another 6 months! What a relief!

It’s difficult to describe how emotional, stressful and heart-wrenching our journey has been this year, for our whole family. The journey has come at a huge cost to Jeff and me, both emotionally and financially, with many flights and a total of 5 weeks in Melbourne.

Our older girls had to give up their activities, swimming and playgroup, and we isolated ourselves from family and friends for fear of bringing any ‘bugs’ into our home and therefore jeopardizing Chelsea’s chance of survival. More than any of that, our darling Chelsea has had to endure so much to her tiny little body, all because she won that lottery that no-one would ever want to win. It’s very likely she’ll need ongoing valve replacement heart surgery throughout her life.
Family – finally together at home

HeartKids has supported us throughout this journey. We are most appreciative of the work of their Family Support Coordinator and all the services they provide to families like ours. Whilst our journey appeared unique, we encountered scores of others enduring similar trials. Heartkids South Australia has also allowed us to meet many other wonderful families who have shared similar painful experiences and helped relieve our self imposed isolation. We cannot thank the Adelaide Women’s and Children’s Hospital, the Royal Melbourne Children’s hospital and HeartKids SA enough, for their support and dedicated work for children with CHD.

Please support Chelsea and the many thousands of other children like her.

Jensen Ashby – Our Little Miracle

A parent’s story – our little miracle: VIDEO

Little Jensen Ashby, who is featured in this video, has his full story shown below:

I never imagined that I would have another baby, so when my test came back positive I was thrilled…scared but thrilled! It had been 14 years since my last baby, who was born completely healthy with no complications and I just assumed this baby would be the same.
My pregnancy progressed uneventfully, we had all the tests and everything was looking good. I remember going to the 18week ultrasound and all we could talk about was whether we were going to have a girl or another boy. We were definitely not expecting what was to come. The sonographer took such a long time looking at our baby’s heart from every possible angle until I finally plucked up the courage to ask if something was wrong. He told us that he needed to have a good look and send the report to our obstetrician. We received a phone call that afternoon to meet with our obstetrician first thing in the morning. This was at this point that we knew something was seriously wrong!
That night we slept little and cried lots, not knowing what was wrong with our baby, we just waited and waited for the morning to come. We thought that it was the longest night ever, but looking back, it was just one of many long, sleepless, tearful nights.
We were told that our precious baby boy had a serious heart defect called Transposition of the Great Arteries or TGA. The main arteries, the Aorta and Pulmonary Artery were in the wrong positions, which meant that while he was still inside the womb it wasn’t an issue but once he was born the oxygenated blood would not be delivered to his vital organs. He would need open heart surgery, a procedure known as an Arterial Switch for him to survive. I just sat there and cried, not knowing what this meant and not knowing what my baby’s chances of survival were and not knowing how we would ever be strong enough to deal with this.

Suzanne and Jensen

We were then referred to the Royal Brisbane and Women’s Hospital to meet our baby’s cardiologist, Dr Alex Gooi, who told us that our baby had standard TGA with no signs of other defects. Once he was born he would have to have a procedure called a Balloon Septostomy to allow the blood to mix to keep him alive until his open heart surgery, which would probably be scheduled for a month after he was born. We were also advised that the success rate for the Arterial Switch was higher than 90 per cent and that our baby should be able to live a normal healthy life if there were no further complications. We left there feeling completely exhausted, but slightly relieved that the prognosis was so good.
The rest of the pregnancy was difficult. Physically everything was going really well. Health-wise I was feeling great…but mentally, not so good. Most days I was positive, but on other days I would just sit and cry and imagine what it would be like to have my baby taken away to have major heart surgery. I also imagined the very real possibility that my little boy may not make it and I quickly tried to dismiss those thoughts before they ate away at me. I wondered how this could have happened to my little boy, was it something I did, or didn’t do, something I ate, vitamins I didn’t take???? The medical answer is that it is completely random and could happen to anyone and could not have been prevented. But even that thought did not make it any easier.
The day came for my scheduled caesarean section and we were a bundle of nerves. We had been staying at the Ronald McDonald House in Brisbane for the previous two weeks and walked over to the hospital to face the most difficult times of our lives.
Jensen Jeffrey Ashby was born 8 pound 11, in a theatre full of medical staff and was very, very blue. I was not able to hold him. I saw him briefly before they rushed him away. I was taken up to see him a few hours later and was told that he wasn’t doing very well, the balloon septostomy didn’t work and his oxygen levels were very low. They were in the midst of discussions with the staff at the Prince Charles Hospital as to what they should do. The next morning his oxygen levels were so low that he was taken by ambulance to the Prince Charles for emergency open heart surgery. I hadn’t even had a chance to hold him.
We drove to the Prince Charles to meet with the surgeon, Dr Andrew Clarke who advised us the risks of the surgery. To be quite honest I don’t really remember much of what he said, the staff were in the background saying that they had to take him immediately, as he was getting worse. One thing I do remember is being told by a staff member that there was a possibility that he could die, but they would do everything they could to help him. I was taken over to give my little man a kiss before he was rushed away..again.
Jensen was in surgery all day. All we could do was wait, hope and pray. Finally Dr Clarke came out to tell us that it was successful and we could see him shortly. I wasn’t prepared for the sight I saw. So many tubes, machines, lines, doctors, nurses, lots of blood and a very puffy, swollen little baby. It was horrible, but he was alive!
Over the next week, there were various complications, a major bleed, renal failure, problems with his lungs and he still wasn’t improving. His chest was closed, then re-opened because he was still very swollen. We kept waiting to be told that he was on the mend, but nobody could tell us that. Instead we were advised that he had Pulmonary Stenosis, his pulmonary artery was narrowed and he needed another operation to widen it. So off he went for his second open heart surgery in less than 2 weeks.
This one was a little easier, as we were told that the risk of him not making it through this surgery was around one percent. I was so happy when he picked up almost immediately after the second surgery. We spent one more week in ICU where we finally got our first cuddle at almost 3 weeks old. We were then transferred to the ward and went home a week later.
We were told that there was a chance of Jensen having Cerebral Palsy because of the low oxygen levels, so we have been having regular physio and paediatric appointments and were told we would not know whether he had the CP or not until he started walking (or not walking) He was slightly behind on his milestones, so there were some concerns, but on Boxing Day, a few weeks before his first birthday Jensen took his first steps.
We still have to see Dr Alex Gooi every 3 months for a check up at this point, as there is still some narrowing of his pulmonary artery, but the good news is that the artery is growing. There is always the possibility of more surgery down the track, but our fingers will be forever crossed. Thanks to Dr Alex Gooi, Dr Andrew Clarke, all the staff at the Prince Charles Hospital, the Royal Brisbane and Women’s Hospital, Ronald McDonald House, obstetricians, HeartKids Queensland Family Support Coordinator Silvia Stohr and the sonographer who discovered the defect so early…we know have a gorgeous, happy and healthy little boy.
Our special thanks are extended to HeartKids for their ongoing support and for the work they are doing to ensure less children like Jensen are born with CHD.

No presents please.. I am just about to turn one and am happy to be alive!

Little Jensen is just about to turn one.. He and his family have asked that donations be made to HeartKids in lieu of presents!

Elizabeth’s journey

My name is Effie Heldzingen and I have a Heartchild called Elizabeth.
Elizabeth was born at St George Public Hospital on 9th November 2005
Her doctors noticed our baby was distressed and they decided at 8 ½cm dilated that I have an emergency caesar.

The caesarean was all a bit of a blur to me as I was in a daze. However I did see our daughters face for a split second, and all I could hear in the background was its ok, keep breathing little one then I had a feeling that something was wrong.

When Elizabeth was born she didn’t cry straight away and she was blue and floppy. She was then taken to the special care unit to be monitored. I still had not held my baby in my arms and when I came back from the op theatre she wasn’t there.

They told me she was still in special care and they would let me know how she is. At 3.30 am we were told that she may have a heart condition and that Elizabeth would be taken to Sydney Children’s Hospital via nets to have further tests.

My husband and I were speechless, I still had not held my baby and was so distressed. They brought her into the ward for me to see before they took her away, I wasn’t able to hold her but just seeing her from a distance made me feel so happy and sad at the same time.

Leslie went with Elizabeth with nets to SCH and he called later on in the morning to inform us that she has been diagnosed with 3 Complex Heart Conditions
1) Transposition of the Great Arteries(TGA)
2) Ventricular Septal Defect(VSD)
3) Pulmonary Atresia

These heart conditions are common on there own however its a one in a million chance that you would get all these three conditions at once.

I was transferred to the Royal Hospital for Women’s later that day so that I could be closer to our daughter.
A meeting was scheduled with the Surgeon and Cardiologists to discuss Elizabeth’s conditions and we were told that there will be 3 operations to take place.

Elizabeth had her 1st Procedure called BT-Shunt at just 2 days old. Then at 1 year she had the 2nd Operation – Glen Procedure which was aborted half way on the table as Elizabeth’s heart had swollen from 13 to 20. The Glen Procedure was rescheduled 3 months later and proved to be a success.

Elizabeth always had a smile on her face – despite the pain and discomfort

Her 4th Operation will be when Elizabeth is about 4-5 years of age and this operation is called the Fontan Procedure.
Her doctors noticed that Elizabeth has a leaking valve which may cause some concern long term and further down the track she may need a pacemaker.
Being given all this information at the time was all confusing and trying to understand all these complexed heart conditions was frightening. We both wanted to know more but to find information was extremely difficult.
More and more children are being diagnosed with Childhood Heart Disease and we as parents of a Heartkid are amazed at the lack of awareness out there for our children as its the biggest killer of all.
Leslie and I would like to thank HeartKids for giving us the opportunity to learn from other families with Heart kids.
When Elizabeth’s 2nd operation was aborted we were devastated. Karen Sherlock, the HeartKids Family Support Coordinator, was there to support us even though we crossed paths in and out of the ICU unit but she was there and that gave us inspiration. Thank you for your kindness and thoughts Karen. You are wonderful!!
We are so lucky that we have a big family unit with lots of support to go around. Not to mention the Doctors and Nurses who guided us along the way.
I guess we are all given situations in life and we are more than capable of dealing with them. Sometimes it can be hard to accept but other times it makes you appreciate all that you have in life.
This is why it is so important to support a charity like HeartKids. HeartKids provides support to families, raising awareness in the community and donating much needed funds to research.

I update Elizabeth’s website as often as I can please feel
Free to take a look and see what mischief Elizabeth is up to:
go to http://www.heldzingen.com/elizabeth

Regards Effie, Leslie and Elizabeth Heldzingen

Please support Elizabeth and the many thousands of other children like her.

Makayla Tyrrell

Makayla’s mother discovered something was amiss with her pregnancy during her 20 week ultra sound which showed her child had a major heart defect. Whilst she was given options to terminate the pregnancy she chose to keep her baby. On 9 December 2007 the world welcomed Makayla.

Within 2 hours she was transferred to the Royal Children’s Hospital in Melbourne where it was confirmed she had a multitude of heart defects which included; Transposition of the Great Arteries, Double Inlet Left Ventricle, Ventricular Septal Defect and Hyperplastic Right Heart Syndrome.

The ensuing months have been somewhat challenging for Makayla and her family, with a series of operations and constant trips to the hospital. She is currently booked in for her fourth operation and has another planned at around 5 years of age, things are looking positive for this beautiful girl.

Her mother Lauren reports she has been most appreciative of the support offered to her and her family by HeartKids. “These have been most challenging times, but we take each day as it comes. Everyone has to keep smiling as Makayla never stops smiling. We are lucky that we have a happy baby.” says Lauren.

Update

Young Makayla has been in the news in recent weeks due to the repeated cancellation of her surgery. This has been due to a lack of ICU beds and trained nurses. See article on ‘Surgery Cancellations’ for the full story.

LATEST NEWS

We are delighted to announce Makayla has had her much needed operation and has come through this successfully. We wish her and her family all the best for the future.

Please support Makayla and the many thousands of other children like her.

Heart Conditions - Detailed information for parents

HeartKids is pleased to offer this new online resource for people wishing to know more about the various heart conditions. The site includes details on tests, procedures and operations along with details on health and nutrition, exercise, schooling, adult congenital heart issues. Click this link to view the site: Heart Conditions – Detailed information

Nine News - ‘Zipper kid’ on path to normal life

Teen Camp

Kids with Heart - The Morning Show with Larry and Kylie

Help Heart Kids - Channel 7 Sunrise story

Inside the life of a zipper kid - Daily Telegraph

GOVERNOR-GENERAL WELCOMES HEARTKIDS INTO HER HOME

GOVERNOR-GENERAL WELCOMES CHILDREN
INTO HER HOME TO LAUNCH THE ANNUAL ‘CUPPA FOR HEARTKIDS’ CAMPAIGN

Like most members of the public, the Governor General acknowledged how unaware she was of the high incidence of Childhood Heart Disease, and that it still is the greatest killer of children under 5 in Australia.

Government House, Canberra was alive with laughter and excitement today as Her Excellency Quentin Bryce AC opened her doors to welcome children born with childhood heart disease and their families and officially launch the Cuppa for HeartKids campaign. The function, which included leading paediatric cardiologists, HeartKids Australia corporate partners and key members of the community, was held at Yarralumla to celebrate the launch of the 2010 Cuppa for HeartKids campaign.

“To have the Governor General supporting HeartKids means a great deal to our young charity and to the many thousands of families affected by Childhood Heart Disease each year.” Said HeartKids Australia CEO, Mr Neil McWhannell “We were honoured when Her Excellency offered to host the launch morning tea for the Cuppa for HeartKids campaign, our major national awareness and fund raising initiative. Having endorsement of the Governor General is so special and will assist in generating much needed publicity for our charity. Most people think that cancer is the biggest killer of children under 5, they are always surprised when I tell them that it is actually Childhood Heart Disease (CHD) which takes more lives than all other childhood diseases combined.”

Her Excellency spent the morning talking with families whose lives have been affected by CHD and commented on the impact this had on her.

“Like most Australians I was unaware of the high incidence of Childhood Heart Disease (CHD) within the community and was shocked at the statistics, especially the fact that 6 children are born each day in Australia with these devastating heart conditions and sadly 5 children are lost every week.” said Her Excellency Quentin Bryce AC.

“I encourage all Australians in their homes, workplaces and schools to get behind HeartKids in this simple act of hosting a morning tea to make a real difference to the many thousands of children affected by these congenital heart defects.”
Facts about CHD: Sadly, CHD claims more lives in Australia than all other childhood diseases combined – twice that of childhood cancers. This equates to 35% of all childhood deaths in Australia or put more simply 5 deaths each week. “Most people associate heart defects with older people and think they are caused by an unhealthy lifestyle. They don’t realise how many children are born with heart conditions or acquire them early in life as a result of illness.” said Mr McWhannell
One in every hundred children in Australia is born with a heart condition, which equates to six children a day, making this the most common birth defect in Australia. Most primary schools will have at least one or two children with heart conditions, whilst secondary schools will often have one or two heart kids in every year group.
Cuppa for HeartKids is a simple fundraising initiative, running throughout August and September 2010. This activity is designed to be a fun event where people host a morning/afternoon tea with friends or colleagues to raise both money and awareness and most importantly helping in the fight against CHD.

“Last year was our first Cuppa for HeartKids campaign and we raised over $85,000. This year we have set an ambitious target of $300,000” said Mr McWhannell “as we are a small charity and receive no government funding and rely completely on the generosity of the community to make this campaign a success. We also guarantee that 100% of the monies raise goes directly to the cause. All of our administration and other costs are all covered by one single sponsor – this is not a guarantee that many other charities can make” he said.

A school version of the campaign will also be rolled out “Cupcakes for HeartKids’ where primary schools will hold cake stalls for their students, encouraging kids to support kids in need.

For further information contact:
Heidi Shakespeare – Marketing and Events Officer
0433 859 100 or

2Day FM’s Charli Delaney Hosted a Tea Party to Launch the 2010 Cuppa for HeartKids Campaign

CHARLI DELANEY HOSTS ‘TEA PARTY’
TO LAUNCH THE
2010 ‘CUPPA FOR HEARTKIDS’ CAMPAIGN

HEART DISEASE WILL TAKE THE LIFE OF 5 AUSTRALIAN CHILDREN THIS WEEK

Charli pours tea for Analica Thymakis who was in hospital having a pace maker fitted.

2Day FM radio host and ex Hi-5 performer Charli Delaney met with heart kids at Sydney Children’s Hospital, Randwick to host a tea party and help celebrate the launch of the 2010 Cuppa for HeartKids campaign. Charli sat down with Chloe Field a four year old heart kid who has in her short life endured three open heart surgeries and two and a half year old Analica Thymakis who was in hospital getting a pace maker fitted after her heart stopped beating.

“We are thrilled to have Charli onboard to support this initiative” said HeartKids Australia CEO Neil McWhannell. “Charli is so popular with our kids as was evident today when they all came down to meet her” While the official launch of the campaign will take place at Government House on the 5th of August, the real fun was had today at Randwick.

“We hope that Charli will help generate much needed awareness for Childhood Heart Disease (CHD) as it is still off the radar for much of the population. When people are asked what they think is the biggest killer of children under 5, the top three answers are always SIDS, cancer or road accidents” said Mr McWhannell “They are always surprised when I tell them that it is actually Childhood Heart Disease.”

CHD claims more lives in Australia than all other childhood diseases combined – twice that of childhood cancers. This equates to 35% of all childhood deaths in Australia and is the most common cause for admissions to hospital intensive care units across the country.

Heart disease is more widespread than most people realise. It is the most common birth abnormality, affecting one in every 100 children, that is 6 babies born with CHD every day in Australia.

In its’ 2nd year, the ’Cuppa for HeartKids’ campaign is one of the major fundraising initiatives for HeartKids Australia and this year we hope to raise over $300,000. People are asked to register to host their own morning or afternoon tea at http://www.cuppaforheartkids.org.au

A school version of the campaign will also be rolled out “Cupcakes for HeartKids’ where primary schools will hold cake stalls for their students, encouraging kids to support kids in need.

For further information and additional larger images please contact:
Heidi Shakespeare – Marketing and Events Officer
0433 859 100 or

Mum’s heartfelt desire to help

ASDM Supporting HeartKids

ASDM CEO, Dr Greg Roger, recently met with HeartKids CEO to establish a new national partnership. ASDM is a leading surgical equipment manufacturer and has pledged to donate a percentage of each sale throughout the country to support HeartKids and its work.

Neil McWhannell with ASDM CEO Dr Greg Roger

Visit the ASDM website and view all its products

Ronald McDonald House Charities supporting HeartKids

HKA CEO recently had the pleasure of meeting the CEO of Ronald McDonald House Charities. Malcolm Coutts informed Neil of a number of new programs and initiatives that they have developed that are open to heart kids and their parents to use. These include:
Ronald McDonald Learning Program:
This program involves one on one tutoring provided at the child’s own school. With CHD being shown to affect the learning of children in up to 50% of cases, this could be a great program to assist our children with any learning difficulties.
Ronald McDonald Family Retreats:
These superb holiday homes are situated right around the country and are available to families who have had a seriously ill child to enjoy some respite. Although bookings in holiday periods are always strong, there are numerous places available during school terms and weekends.
RMHC – Charlie Bell Scholarships:
These scholarships provide financial assistance towards vocational studies for those who have experienced serious illness. This will hopefully allow these children to fulfil their career dreams and are available to help with university fees, apprenticeship tools, books etc.
Ronald McDonald Houses:
RMHC now has 13 of these houses throughout the country. These are available to those over 100km away from their home and whilst often taken up by cancer patients, are available to heart kids if space allows.
To learn more about these programs or to apply, simply call 1800 307 642 or log onto their website: http://www.rmhc.com.au

Canon supporting HeartKids

HeartKids recently received an incredibly generous donation of photographic and office equipment by Canon. Equipment included digital cameras and printers. These will be placed in each of the major children’s hospitals and be available for parents to capture and print their precious moments with their children. In addition Canon provided printers and consumables for all the State Offices. This generous donation follows on from the $60,000 given to HeartKids Victoria after Jo Larsen won the Canon ‘Creative for a Cause’ photography competition with her photo of her son Zeke.
Canon has subsequently made HeartKids one of it charities of choice for the year and is looking at additional ways it can support our work.

Canon Managing Director, Mr Kobayashi, Manager of Corporate Communications, Shane McClelland and General Manager of Corporate Strategy, David Klineberg present HeartKids CEO with some of the new equipment.
Click on the Canon logo to visit their site and view their full range of products:
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Kiwanis - Serving the Children of the World

“Kiwanis Clubs around Australia have had a long association with HeartKids. For many years Kiwanis clubs having been supplying HeartKids with heart monitors and other equipment, organizing family camps and outings (such as the Deniliquin Family Camp, the Shepparton KidsTown Picnic, the Myuna Farm Day, and the Candlebark Farm Family Camp at Healesville), paying printing costs, supplying furniture and white goods for family lounges attached to cardiac wards and generally providing support for their local HeartKids branch. Kiwanis is also heavily involved in the annual Queenscliff Seafood Feast which has raised over $500,000 for the Royal Children’s Hospital, Melbourne.

In addition, since 2006, Kiwanis Australia (the body which comprises the 50 Kiwanis Clubs around Australia) has raised and contributed $140,000 towards research into Childhood Heart Disease. In 2006 $50,000 was donated to help establish a national HeartKids data base, in 2007 $40,000 was contributed to the general research pool of the ANZCHRC, and in 2008-9 $50,000 was contributed to Project Gecho, the Rheumatic Heart Disease study being conducted by the Menzies School of Health Research in Darwin and aimed at improving the quality of life of indigenous children suffering from RHD.

Kiwanis aims to support CHD research into the future and looks forward to a long association with HeartKids Australia.

Kiwanis is one of the largest community service organizations in the world and has, as its focus, children and families. Kiwanis conducts its activities in a relaxed and fun environment and is always happy to welcome new members. For more information, visit the web site www.kiwanis.org.au or phone Phil Riggio on 0417 342 860.

Kiwanis : Serving The Children of the World.”

CEO wins National Award

HeartKids CEO Neil McWhannell, has won the Equity Trustees Not for Profit CEO of the Year Award for First Year Achiever. These Awards are presented to outstanding leaders in Australia’s Not For Profit (NFP) and charitable sectors, recognising service excellence, enhanced organisational image and partnership success.

Neil started as HeartKids Australia’s first national CEO in June 2007 and has quickly brought focus and rigour to the NFP organisation, which was previously a loose collection of state-based bodies born out of the passion of a few families coping with all the emotions associated with having a child with congenital heart disease.

The Award was presented at a lavish ceremony at the National Gallery in Melbourne. Whilst the award acknowledges personal achievement, Neil prefers to see it as a great opportunity to promote his charity. With congenital heart disease being the most common birth abnormality and the greatest killer of children under the age of 5, Neil believes this award provides his young charity with a great opportunity to raise awareness of the alarming facts.

Most people I speak to are unaware of these facts, being more aware of the needs of cancer and adult coronary heart disease because of the financial capacity of the big charities to promote their cause. Each day 6 children are born with heart disease, over 2000 a year. These children fill half the beds in all children’s Intensive Care Units. Sadly around 250 of these children still succumb to the disease each year.

Neil says one of the great joys of his job is speaking to community groups and individuals about the needs of childhood heart disease.

HeartKids works to assist children and families who have been affected by Childhood Heart Disease and with corporate support is now funding much needed research in the hope less children will be born with these diseases and that mortality rates will decrease.

FIXING A BROKEN HEART

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

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

Surgery Cancellations at Royal Children’s Hospital

Each week, six Australian children are born with heart problems requiring operations to save them or give them a chance to actively take part in life.

Between them, (clockwise from top left) Chrysoula Petras, Kevin Innes, Makayla Tyrrell (on his lap), Brodie Guy, Lincoln Catlin and Julian Michielin have had 19 operations cancelled since June.

More than 400 children are on waiting lists for cardiac surgery in Victoria, with one angry mum saying “it’s just not good enough”.
Up to 60 operations were cancelled at the Royal Children’s Hospital last month because there is nowhere for them to recover.
The hospital has some of the world’s best heart surgeons ready and waiting to treat the young patients.
But the lack of intensive-care beds means the operations cannot proceed, prompting families to demand the State Government immediately fund 10 additional beds and recruit and train enough nurses to operate them.
After turning blue and being rushed to hospital on Sunday night, eight-month-old Lincoln was upgraded and booked for a major operation this morning.
With surgery already cancelled six times this month, his mother Penny Brunton was not surprised when the hospital called last night to tell her it was off again.
“We have the best surgeons you can get and they just can’t do what they are supposed to be doing,” she said.
Last Friday, all cardiac surgery was called off.
Last month, a 10-day-old boy with breathing problems became the first child in 14 years to be sent interstate because all of the state’s pediatric intensive care beds were full.
The Royal Children’s Hospital has 17 intensive care beds that must be supervised 24 hours a day by specially trained nurses.
But emergency cases have forced scheduled operations to be cancelled, especially on cardiac patients, who account for 45 per cent of intensive care occupants.
The hospital’s chief of surgery Dr Leo Donnan said the problem was finding intensive care nurses to staff beds.
“Urgent and emergency cases are having to take precedence on our elective,” he said.
“We are trying to milk every ounce out of this system at the moment to ensure there is no one left behind and there is no child at risk.”
The number of complex heart patients being sent to the Royal Children’s from interstate has increased 80 per cent since 2001.
The Australian Medical Association believes Victoria needs another seven pediatric intensive care beds – costing $1 million a year each – and wants another eight neonatal intensive care beds, costing $1.5 million a year.
HeartKids Victoria president Scott Reinke said 10 ICU beds needed to be reserved for cardiac patients.
“It is not about waiting for the new hospital. It is past critical point now,” he said.
“We need at least 10 more ICU beds immediately, with trained nurses.”
In a June email leaked to Opposition health spokeswoman Helen Shardey, the Department of Human Services asked Victorian hospitals to treat children in adult intensive care beds, ignoring established policies.
“Following discussions with the Royal Children’s Hospital and Monash Medical Centre, we have been asked to convey to CEOs the significant pressure that PICU services are experiencing,” the memo states.
“As such, your health service may be asked to care for a patient under 16 years of age in your adult intensive care unit.”
Health Minister Daniel Andrews’ spokesman, Jason Frenkel, said the RCH’s intensive care unit treated 1400 children a year, with one in five coming from interstate.
“With an international shortage of pediatric ICU nurses, there are sometimes limits on the number of ICU beds that can be safely opened,” he said.
“However, the Brumby Government has significantly increased the state’s neonatal and pediatric ICU capacity from 52 beds in 2000 to 72 beds in 2008.
“We are building a brand new $1 billion state-of-the-art children’s hospital with the capacity to treat an extra 35,000 patients every year.
“There will be an extra 21 ICU beds at the new Royal Children’s Hospital.”

How to Assist

HeartKids knows that cancellation of surgery causes distress to children and families, and the huge difficulty in re-scheduling your life to work around rescheduled operations (especially for country families and the increasing number of interstate families that come to the RCH). HeartKids also has concerns about the medical impact of these cancellations.

As a result of this level of surgery cancellations, HeartKids has written to the State Government Ministers, State Opposition, Department of Human Services and the RCH.

HeartKids will be working on this matter actively. We believe this is an important matter for meeting today’s requirements, but also is a serious issue in relation to the new RCH.

We encourage Heartkids families to prepare themselves for the fact that they may be facing surgery cancellations, and possibly many times. If you find yourself in this position, please don’t hesitate to contact us for any assistance or advice we may be able to provide. Additionally, we recommend that members that do find themselves in this position write to their local State Member as well as the following Ministers:

The Hon Nicola Roxon Federal Minister for Health and Ageing
MG 50
Parliament House
Canberra ACT 2600
email:

Hon John Brumby, Premier, Level 1, 1 Treasury Place, East Melbourne VIC 3002

Hon Daniel Andrews, Minister for Health, Level 22, 50 Lonsdale Street, Melbourne VIC 3000

Maxine Morand, Minister for Children & Early Childhood Development, Level 1, 2 Treasury Place, East Melbourne VIC 3002

Mr Ted Baillieu, Office of the Leader of the Opposition, Parliament House, Spring Street, East Melbourne VIC 3002

Helen Shardey, Shadow Health Minister, Suite 1/193 Balaclava Road, Caulfield North VIC 3161

Wendy Lovell, Shadow Minister Children & Early Childhood Development, 138 Welsford Street, Shepparton VIC 3630

If you would like to add your support to this issue, we encourage you to write to these Ministers.

Heather Round - HeartKids SA Mum named Mother of the Year

MOTHER-of-six Heather Round not only looks after her own children but also helps the families of children with congenital heart disease.

Mrs Round, 35, was named Barnardos’ Australian Mother of the Year.

In 2002, she lost her son Max, a twin to Henry, 5, to Hypoplastic Left Heart Syndrome when he was just 13 days old. Children with the disease typically have to be treated in Melbourne. Mrs Round decided to set up an accommodation support network, Max’s Place, to support families facing the financial burden of living for up to six months in Melbourne. “We would have loved to be able to cure congenital heart failure in kids but, because we can’t do that, we thought we would help the families,” she said.
“She’s Wonderwoman,” Mr Round said. Tim said Heather was a devoted mother. “Her life is about our kids and everything else is second to that,” he said. She was nominated by her mother Judith Parkinson who said Heather always had put others first. “I think she’s great and she probably should spend more time on herself, but the kids always come first,” Mrs Parkinson said.

Max’s Place

Max’s place are a group of three units that Heather & Tim Round have purchased in dedication to the memory of their son Max – these units are for the use of families that have to relocate to Melbourne for life giving surgery for CHD children. Max’s Place is a one bedroom apartment, with a kitchen, living and bathroom, which is located directly opposite the Royal Children’s Hospital.

The apartments are located in the Royal Park Towers and has a security entrance. They also have car parking spaces for the families staying in the apartments to use.

http://www.heartsofhope.iinet.net.au/homepage/max.html

Pasta Master Sponsorship Launch

HeartKids Australia is delighted to acknowledge and the outstanding support of the Pasta Master Group – owned by Andrew Douglass. Andrew’s own life has been affected by this dreadful disease with his daughter Matisse undergoing a heart transplant in her early life. Rather than dwell on this, Andrew and his company led by Chris Szlachetko have sought to assist HeartKids in order to do something about this. As the first major foundation sponsor of HeartKids Australia, Pasta Master will always hold a special place in our history.

It has been as a direct result of their support that our organisation has been able to develop a national office and quickly develop as a charity that will make a real and tangible difference to what we believe is Australia’s most significant children’s health issue.

Zippa Day - Pasta Master Launch

I am dying but I want to help HeartKids - with latest update

Tiffin was born with an asd and Congenital heart block. It was fixed at the age of 4 with a pacemaker. Tiffin then enjoyed a normal life. She played sports, did swimming all lived like other children. However when she was 13 she complained
of a stomach ache and after many tests doctors discovered she had contracted cardiomyopathy, which had severely compromised her heart.

She has known for a long while that she would need a transplant, but with a rare blood type and with so many risks attached to heart transplants she lives in limbo and is continually in and out of hospital.This is really draining for her and making her feel really ill.

However rather than become introverted and disillusioned, Tiff recently contacted the CEO of HeartKids to see if she could do something with her remaining life to assist others like her and to hopefully raise funds for research to ensure less children are born or acquire heart disease and that mortality rates improve.

Tiff with HeartKids CEO Neil McWhannell

If you want to help Tiff achieve her goal please visit the donation section in the website.
Channel Seven’s Simon Reeve has been one of the first to offer his support – dedicating his recent African Adventure to Tiff’s tenacity and strength to overcome adversity.

RECENT UPDATE

Readers will be delighted to learn that, with her health rapidly detriorating and after a series of minor heart attacks, Tiff received a call that an almost perfectly matched heart was available for transplant. Was this karma for someone wanting to help others? After a full day’s surgery and 10 days in hospital, Tiff has a whole new life in front of her. Tiff reports all is progressing extremely well with her body accepting the new organ as well as could be expected. She says it is like having a V8 in her chest. She has so much more energy and for the first time in her life she is able to contemplate a normal life. Tiff is even now looking for a job and would welcome a call from anyone looking for an intelligent vibrant girl with a really positive outlook on life. Please call HeartKids Australia if interested in meeting Tiff.

Tiff just four days after her heart transplant.

St Jude Medical supporting HeartKids

The donation by St Jude Medical has come about through a pledge to make a financial donation for every Heart Valve implanted in Australian hospitals for the past three months. This donation will assist HeartKids Australia to build capacity, fund research and raise awareness for their plight. Along with awareness, the donation will be used to fund a number of exciting research projects. These projects include:

• Working on the Genetic Causes of Childhood Heart Disease.
• Minimising risks associated with Open Heart Surgery.
• Assisting in Rural and Remote areas where there is a disproportionate number of children with Heart Disease, often resulting from Rheumatic fever.

The 3 month project has been so successful St Jude announced a further 3 months of operation of the most generous offer.
HeartKids CEO Neil McWhannell with St Jude CEO Geoff Stevens

Manchester Unity announced as Primary Foundation sponsor

At the AGM Dr O’Reilly announced that HeartKids had been selected as its sole recipient of its philanthropic support for the next 5 years. Dr O’Reilly said HeartKids had been selected because of the significant need to address children’s heart disease.
This launch was followed by another at the Grand Conference of the Manchester Unity Friendly Societies. This conference which included Oddfellow Lodges from around the country warmly received news of the partnership with many of them expressing a desire to also assist HeartKids with its work. Whilst the majority of this money will be directed to support Research, some will also be allocated to the various State Groups to support their Family Support Coordinator positions. Pictured is Manchester Unity CEO John Brogden, HKA CEO Neil McWhannell, Daniel and Karen Sherlock and Dr Bill O’Reilly

Neil McWhannell and Dr Bill O’Reilly

Karen Sherlock giving her moving address on how the Manchester Unity donation will help HeartKids children and families whilst Daniel waits patiently for the cheque!

HeartKids Australia welcomes its foundation CEO

I am delighted to announce that Neil McWhannell JP has been appointed as the founding Chief Executive Officer of HeartKids Australia.

Neil impressed HeartKids throughout a rigorous recruitment and interview process with his candour and enthusiasm, a highly engaging manner with excellent presentation skills, and broad experiences equipping him to lend great momentum to the tasks at hand for those who care about Childhood Heart Disease.

Originally coming from an educational background where he was CEO/Principal at some of Australasia’s leading independent schools, Neil then moved into the not for profit sector where he has spent the last 5 years, four of them as CEO of the YMCA of Sydney.

Neil has a real passion for serving the community being a member of Sydney Rotary and the current Chairman of the NSW Division of the Duke of Edinburgh Award. Neil is also a senior Rugby Referee in New South Wales. He is married with two children in their twenties.

Neil possesses a wide and diverse range of skills and experiences in Senior Management and Executive roles. He is a member of the Fundraising Institute of Australia and has also served on a number of Boards and Foundations.

HeartKids Australia is looking forward to the benefits of Neil’s leadership and passion. He advised us through his interviews that he places a high priority on working closely with all members of the Heartkids family to fulfil our vision. You can expect to see him in the near future as he moves to establish himself and gain a full understanding of current HeartKids operations.

I am sure you will all join with me in congratulating Neil and wishing him well for the exciting challenges ahead.

Dr Dominic Frawley
Chairman
HeartKids Australia

HeartKids Events

HeartKids runs numerous events in each State. These include Zippa Day, HeartKids Week, Family Camps, Teen Camps, Morning Teas, Fundraising Balls on so on.

Please contact your HeartKids State Organisation for further details on upcoming events.

Heart Felt Desserts

Heart Felt Desserts Fundraiser Awareness campaign
Throughout May 2008 some of Sydney’s leading restaurants are participating in the “Heart Felt Desserts” campaign to raise funds for HeartKids. These generous restaurants will be asking their pastry chefs to design a dessert for HeartKids. $2.00 from the proceeds of every sale will go back to HeartKids to support our programmes. See HKNSW website for further details

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HeartKids newsletters

The following are recent State newsletters.

HeartKids VIC Winter 2010

HKVicVolume_20-2.pdf

HeartKids VIC Autumn 2010

HKVIC News Autumn_2010.pdf

HeartKids NSW Summer 2010

HKNSW Summer10.pdf

HeartKids SA Summer 2010

Summer 2010

HeartKids VIC Summer 2010

Newsletter_Summer_2009_website_2.pdf

HeartKids VIC Autumn 2009

HKVicVolume18-4.pdf

HeartKids VIC Summer 2008/2009

HKVicVolume18-3.pdf

HeartKids NSW Summer 2008/2009

HK_Summer2008_singlepage.pdf

HeartKids Vic Summer 2008

HeartKids_Vic_N-L_Summer_2007-2008.pdf

HeartKids WA Spring/Summer 2008/2009

Oct_Nov_Dec_2008_Newsletter.pdf

HeartKids Qld Spring 2008

HKQLD_Spring_08.pdf

HeartKids WA Winter 2008

HKWA_Jul_Aug_Sep_2008_Newsletter.pdf

HeartKids NSW News – Spring 2007

HEA404-HeartkidsNews_Spring.pdf

HeartKids NSW News – Autumn 2007

HEA402-HeartkidsNews_autumn.pdf

HeartKids NSW News – Winter 2007

HKVIC<

Read all about Kids Heart Research DNA Bank

Kids Heart Research DNA Bank. An initiative to help understand the cause of congenital heart disease.

KHR_DNA_Bank_Brochure__2_.pdf