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					                                   winter 2008

                  A brave boy
                    called Wil      In this
                          Page 8    issue:
                                    ♥ Sweet success at
                                      Heartfelt Desserts

                                    ♥ Interview with Dr
                                      Christoph Camphausen

                                    ♥ Tiny Tickers Ball

                                    ♥ Dougie the superhero
  ♥ HeartKids NSW - Our Charter

               Who we are...                                      We do this by...                      ♥ Increasing community awareness
                                                                                                          of the high incidence of CHD and
               ♥ We are a children’s charity who                  ♥ Providing opportunities for           its continuing consequences.
               are concerned with the care of                       families and individuals to
               children born with or who acquire                    network with people in a similar    ♥ Liaising with medical and health
               childhood heart disease (CHD).                       situation via our regional coffee     professionals so that a greater
                                                                    mornings, family events, teen         appreciation may be gained from
               Our aims are...                                      camp, Christmas parties,              each perspective.
               To provide various forms of support                  fundraiser events and our all       ♥ Encouraging and supporting
               for parents and families of newly                    important in-hospital family          research programmes aimed at
               diagnosed heart children and                         support coordinators                  the prevention, detection and
               ongoing support for parents,                         programme.                            management of CHD.
               children and teenagers with CHD.

               HeartKids NSW Board 2008                           Employees                             Illawarra Representative
               Chairman                                           Executive Manager
                                                                                                        Hunter Representative
               Ryan Payne                                         Kathryn Meekings
                                                                                                        Kylie Morley
               Vice Chairman                                      M:0406 424 511
                                                                                                        T: 4934 4444
               Allan Bruty                                        Operations Manager                    Newcastle Representatives
                                                                  Dawn Everingham                       Leanda Blackmore
               Peter Sherlock                                     M:0420 364 125                        T: 49472898
                                                                  Family Support Coordinator            Amanda Clarke
               Public Officer/HR Advisor                          (Westmead)                  
               Erron Palmer                                       Kim Mackie                            T: 49450522
                                                                   Mid-west Sydney
               Secretary                                          M: 0406 424 627 or 02 9294 0800       Lisa Chamberlain
               Vicki Davey                                        Senior Family Support Coordinator
                                                                  (Randwick)                            T: 47733007
               Membership Secretary                               Karen Sherlock                        Central West Representative
               Kim Evans                                       Kylie Toole
                                                                  M: 0406 424 620 or 02 9294 0800
                                                                                                        T: 02 6884 7144
               Merchandise Officer                                Fundraising Manager
               VACANT                                             Mary Bowie                            Tamworth Representative
                                                                         Rebecca Taggart
                                                                  T: 02 9427 1440             
               General Members
                                                                  M: 0402 901 921                       T: 0401 545 803 or T: 02 6760 3092
               Maree Kennedy
                                                                                                        ACT Representatives
               Eyleene Hancock                                    Bookeeper                             Kylie and Ian Bennett
                                                                  Jacquie Smith               
               HeartKids NSW                                    T: 02 6241 0215
                                                                  M: 0415 143 747
               02 9294 0800                                                                             Far North Coast Representative
                                                                                                        Tracey Crutcher
                                                                  Regional Representatives    
              Disclaimer                                                                                02 6551 4407 or 0410 469 961
              Please remember that the opinions expressed in      Regional Coordinator                  Hills District Representative
              any article herein represent personal experience    Karen Sherlock
                                                                                                        Maree Kennedy
                                                                  M: 0406 424 620 or 02 9294 0800       02 9629 9743
              APPLICABLE TO ANOTHER CHILD. Parents
              who require more specific information should        North Sydney Representative           Northern Beaches Representative
              check with their child’s own Cardiologist. Also,    Danielle Larkin                       Kim Evans
              please note, that the opinions expressed in the        
winter 2008

              articles herein, are those of the author and do     M: 0401 522 712 or T: 02 9869 7109
              not necessarily represent the beliefs or opinions
                                                                                                        02 9981 6929
              of the committee, staff or board members of         South Sydney Representative           Eurobodalla Representative
              HeartKids NSW Inc. All advertisements in this       Michelle Dawes                        Rhonda Campbell
              newsletter are paid for and are not endorsed by    
              HeartKids.                                          M: 0428 456 361 or T: 02 9545 6361    02 4472 9227

                                                                                                          HeartKids NSW Ph: 02 9294 0800
♥ Words from our Executive Manager

                                           Sadly, this will be my last newsletter for          Jacquie Smith. The dedication these
                                           HeartKids NSW. It has been a wonderful              individuals give to HeartKids is above
                                           two years, first as Vice Chair on the               and beyond the call of duty. I encourage
                                           NSW Board and Newsletter Editor and                 all members to communicate with the
                                           then as Executive Manager. But all good             NSW staff and help us help you by
                                           things come to an end and it’s time for             ensuring that HeartKids continues to
                                           me to devote more energy to my family.              get its message out and becomes a
                                           I want to take this opportunity to thank            force in the not-for-profit sector. See
                                           an incredible team of staff who have                you at the Ball!
                                           made my time at HeartKids so
                                           wonderful – Dawn Everingham, Mary
                                                                                               Kathryn Meekings ♥
                                           Bowie, Karen Sherlock, Kim Mackie and

♥ Words from our Chairman
                                           Kathryn joined the HeartKids NSW                   On behalf of all of HeartKids NSW,
                                           Board as a Volunteer Newsletter                    I wish Kathryn and her family all the
                                           Editor and from there, accepted a                  best in the future and thank them for
                                           position as Vice President at the                  their commitment, support and
                                           October 2006 AGM. In August 2007,                  devotion to this wonderful cause.
                                           she resigned from the HKNSW Board,
                                                                                              Best Regards,
                                           to be the State Manager filling a
                                                                                              Ryan Payne ♥
                                           vacancy left vacant by Maggie Frawley.

I am saddened by the fact that Kathryn
Meekings has resigned from her
The HeartKids movement has made
excellent progress under the
guidance, passion and energy that                                         TETRALOGY OF FALLOT RESEARCH
Kathryn has brought with her and
                                                     Kids Heart Research is participating in an International study looking into the genetics of
applied to her role.                                 Tetralogy of Fallot, a type of congenital heart disease. Our DNA Bank currently contains
                                                     only half the number of DNA samples required to participate in this study. We need your
The State Manager role in HeartKids                                                    help to reach this target.
NSW is one that ‘gets under your skin’
                                                                                    Who can participate?
and it takes a special person to give so
                                                               Individuals who have undergone surgery for Tetralogy of Fallot.
much to the organisation. It is all too
easy to allow this role to take much                 If you would like to be involved in our research please contact Gillian on (02) 9845 2345
                                                                               or e-mail us at
more time than the allocated hours in
the week.                                                            For more information on the DNA Bank please visit us at:
                                                                                                                                                   winter 2008


                                                      Thank you for your interest in our research and helping us beat heart disease in kids!                                                                                                                            
♥ Words from the CEO of HeartKids Australia

                                                                   Meanwhile, the Manchester Unity         In addition to these tangible
                                                                   Community Lodges have agreed to         benefits, we have seen a marked
                                                                   get behind HeartKids with the aim       rise in media exposure and
                                                                   of raising $50,000 over the next five   awareness of our cause, along with
                                                                   years to assist families with travel    opportunities to advocate our cause
                                                                   and accommodation needs.                to government. We have also begun
                                                                   Hopefully, this will complement the     the process of developing
                                                                   work of Heather and Tim. I am           standardised policies and
                                                                   optimistic that I will soon meet        procedures that will minimise our
                                                                   with the ministers from the new         risks and ensure we present
                                                                   Federal Government to highlight         ourselves and operate in a uniform
                                                                   the significant needs and lack of       and supportive manner. As HKA
             I am delighted to announce that one                   government support for a wide           continues to grow and build capacity
             of the HKSA Committee members,                        range of services needed by             it is hoped that many more benefits
             Heather Round, has been awarded                       our families.                           will be passed on the states and our
             the Barnardos Australian Mother                                                               members around the country.
                                                                   Whilst in Melbourne, I also had the
             of the Year. I recently caught up                     opportunity to meet with the HKVIC
             with Heather at the HKVIC morning                     Board. Here we reflected on some           We have seen a
             tea, whilst she was in Melbourne                      of the benefits that have accrued          marked rise in
             visiting Max’s Place and passed on
             the congratulations of the HKA Board
                                                                   since the inception of HKA,                media exposure
                                                                   establishing us as a national entity.
             and all the HeartKids community.                      These included the funding of:
                                                                                                              and awareness of
             Her selfless and generous actions,                                                               our cause
             in response to personal adversity, is                 ♥ Insurances for all states;
             an example to us all.                                 ♥ Creation of new uniform               Preparations are well under way for
                                                                     websites;                             our National Conference to be held
                                                                   ♥ Teleconferences for Managers          in Brisbane on 5 – 6 September.
                                                                     and Family Support Coordinators;      This conference is primarily for
                                                                                                           Management, Board Directors and
                                                                   ♥ Funding for an upcoming
                                                                                                           Family Support Coordinators, with
                                                                     Teen Camp;
                                                                                                           detailed programs being developed
                                                                   ♥ Funding of an upcoming                for each group to ensure maximum
                                                                     national conference;                  benefit. The main theme of the
                                                                                                           conference is ‘HeartKids – The
                                                                   ♥ Software for states;
                                                                                                           Public Face of Childhood Heart
                                                                   ♥ Creation and printing of              Disease’ with sub-themes of what
                                                                     national brochures and                this means and how we intend to
                                                                     presentation folders;                 position and promote ourselves.
                                                                   ♥ Financial support for expansion       We are confident this meeting
                                                                     of a Family Support Program;          will prove of great benefit to all,
                                                                   ♥ HKSA seed funding;                    consolidating the significant
                                                                                                           outcomes achieved at last
                                                                   ♥ Management of National                year’s conference and in the
                                                                     Vending program; and                  ensuing year. ♥
    Heather Round 2008 Barnardos Australia’s Mother of the Year.   ♥ Sourcing of funding to assist         Neil McWhannell
                                                                     families with travel and              CEO HeartKids Australia
                                                                     accommodation needs.

                                                                                                              HeartKids NSW Ph: 02 9294 0800
♥ Upcoming events and regional news

  Goodbye Neran!                          New reps on board                      10.30am. Please let me know if you
                                                                                 are able to come. I am also
  HeartKids would like to say thank       New regional representatives Lisa
                                                                                 planning a bare foot lawn bowls
  you to Neran Everson for her            Chamberlin (Midwest/Penrith),
                                                                                 fundraiser later in the year, so
  tremendous support and dedication       Leanda Blackmore & Amanda
                                                                                 when I have more details, I will let
  to HeartKids over the years. Neran      Clarke (Newcastle) and Kylie Morley
                                                                                 you know.
  has always gone out of her way to       (Hunter) have joined the team. A big
  organise outings and support the        welcome to all!                        My contact details are email
  heart parents in the Illawarra                                        and
  region. Neran has stepped down as       Hello from Lisa                        mobile number 0417489969.
  regional rep for the Illawarra region
  due to study commitments. We wish       Hi, my name is Lisa Chamberlin. I
                                          would like to introduce myself and
                                                                                 Coffee call out
  her all the best.
                                          tell you a bit about myself and my
                                          family. I am a mother of four          Kylie Morley would like to
                                          children: Gabrielle (nine), Grace      organise a coffee morning or
                                          (seven), Jack (four) and our 16-       get together for HeartKids
                                          month old heart baby William. We       families. Please contact her
                                          live in Luddenham, about ten           on or
                                          minutes out of Penrith.                (02) 4934 4444.
                                                                                 And after a successful first
                                                                                 coffee morning, Newcastle
                                                                                 reps Leanda Blackmore and
                                                                                 Amanda Clarke would love to
                                                                                 organise more in the future.
                                                                                 WHEN:     Every last Tuesday of
                                                                                           the month
                                                                                 WHERE: Poppies Nursery Cafe,
                                                                                        Oakdale Road, Gateshead

  Meanwhile, Neran is organising a                                               TIME:     10am.
  dinner for parents of HeartKids to      Lisa with her Heartbaby, William       They are also putting their heads
  be held in September. Anyone who                                               together to hold a BBQ at Blackbutt
  is interested in enjoying a relaxing    My job is to be here to help if you
                                                                                 Reserve on August 24.
  informal dinner with other HeartKid     need anything and if I can’t,
                                          hopefully I can direct you to          For more information please
  parents should contact her on (02)
                                          somebody that can. If anybody has      contact:
  4283 2291 or 0431 450 570.
                                          any fundraising suggestions or         Leanda: chadlea_blackmore@
  And if you are interested in
                                          ideas for a HeartKids family outing,
  becoming a representative in the
                                          please feel free to contact me. We
  Illawarra region, please contact                                               (02) 4947 2898 or 0417 472 898
                                          are always looking for fresh and
  Karen Sherlock on 0406 424 620 or
                                          new ideas.                             Amanda:
  email karen.sherlock@heartkids.                                  I am planning a coffee morning         (02) 4945 0522.
                                          during the July school holidays at
                                                                                                                        winter 2008

                                          my home for all families who are
                                          able to come. The date I have in
                                          mind is Tuesday 15th July at                    >>> continued overleaf                                                                                               
         ♥    >>> continued from page 5

                    Crazy in Sutherland                                                              HeartKids NSW
                                                                                                     web forum
                    Michelle Dawes has organised a
                    morning coffee for those in the                                                  HeartKids NSW is proud to
                    Sutherland Shire, especially any                                                 announce the launch of their web
                    new members on board.                                                            forum for families. Members can
                                                                                                     visit and
                    WHERE: Crazy Maze Cafe
                                                                                                     take part in online discussions.
                           Unit 3, First Floor
                                                                                                     While they are not live chats, there is
                           30-34 Station Street
                                                                                                     opportunity for interested parties to
                                                                                                     take the topic offline with the
                    WHEN:       Thursday 24th July
                                                                                                     intention of developing one-on-one
                                                            delights in ACT                          friendships and we encourage this
                    TIME:       10am
                                                                                                     mutual support base.
                    Please call her so she can make a       On Sunday 13th April, ACT reps
                    booking.                                Tania & Ian Bennett organised a          The forum is permission based and
                                                            picnic for the local families at Black   available to adults 18 years and over
                    (02) 9545 6361                                                                   only. However, we are considering
                                                            Mountain Penninsula to “enjoy the
                    (02) 0428 456 361                       gastronomical delights of a sausage      the development of a teen forum.

                         sizzle”. Four families came
                                                            together, including aunties and
                                                            uncles, mums and dads, brothers
                                                            and sisters.
                    A message from Kylie                    “Canberra put on it’s best winter’s
                                                            day, with a bitter wind blowing off
                                        I would just like
                                                            the mountains but leaving the rain
                                        to congratulate
                                                            until after we had packed up,” said
                                        the Duncan
                                                            Ian. “The kids had a great time
                                        family on the
                                                            eating their sausage sandwiches
                                        arrival of Claire
                                                            and playing in the park while the
                                        Victoria, who
                                                            adults mingled and shared our
                                        was born on the                                              Meanwhile, we encourage teens to
                  Kylie Toole                               experiences.”
                                        31st March and                                               participate in Queensland’s forum.
                                        is doing well.      If you would like to attend any          Visit
                                                            events in the ACT region please
                    I’d also love to have a coffee                                                   Networking is a large part of what
                                                            contact Tania or Ian:
                    morning with all of you on Saturday                                              HeartKids does for parents. It
                    5th of July. Perhaps McCafe?                                                     enables them to engage with other
                                                                                                     families who understand the same
                    If anyone has any questions or          (02) 6241 0215.
                                                                                                     journeys they are going on. So, if you
                    would like to help with fundraising
                                                              Tania Bennett                          are feeling isolated or just curious,
                    for HeartKids, please contact me
                                                                                                     we encourage you to visit the forum.
                    on (02) 6884 7144 or
                                                                                                     It’s up to parents to develop the
                                                                                                     topics and we have a moderator to
                    And thanks to Kathryn for being                                                  manager the topic direction. We
winter 2008

                    here for us all. We will miss you!                                               hope you find the forum useful and
                                                                                                     informative and look forward to your

                                                                                                        HeartKids NSW Ph: 02 9294 0800
♥ Interview – Dr Christoph Camphausen

                                         I was also a member of the federal     service. Thanks to the “Big W, Big
                                         working group “Quality                 Heart” campaign, we have already
                                         Management in Paediatric               achieved a lot. These include a fully
                                         Cardiology”, which later became        digitalised echocardiography lab
                                         the Competence Network for             with latest echocardiography
                                         Congenital Heart Defects funded by     technology; a newly installed heart
                                         the German government.                 monitor system in the ward; a
                                                                                brand-new 24h ECG Holter system;
                                         When did you migrate to Australia
                                                                                a 24 hour ambulatory blood
                                         and what did you do?
                                                                                pressure recording; an exercise-
                                         I moved to Australia in January 2004   ECG and stress-echocardiography
                                         and started as senior registrar in     lab, and the installation of a
                                         Paediatric Cardiology at the Prince    hospital–wide paediatric cardiology
                                         Charles Hospital in Brisbane. After    database.
                                         one and a half years of work under
  Meet Dr Christoph Camphausen,                                                 In terms of cardiology, what areas
                                         peer review, I gained recognition as
  Director of Paediatric Cardiology                                             are you especially interested in?
                                         a Paediatric Cardiologist in
  at Sydney Children’s Hospital. Dr
                                         Australia (FRACP). In addition, I      Paediatric Cardiology depends a lot
  Camphausen’s area of expertise is
                                         worked in Paediatric Intensive Care    on expensive high-tech equipment.
  in paediatric cardiology and he
                                         at the Royal Children’s Hospital in    Therefore one of my special
  finds great satisfaction in helping
                                         Brisbane for nine months and was       interests is non-invasive imaging,
  children eventually become
                                         part of the Queensland Paediatric      mainly echocardiography. However,
  healthy adults.
                                         Retrieval team.                        other modalities like magnetic
  Where were you born and how did                                               resonance imaging (MRI) and
                                         In July 2007, I was appointed Head
  you begin your career in cardiology?                                          computerized tomography (CT)
                                         of Department of Cardiology at the
                                                                                continue to improve almost daily.
  I was born in Germany, grew up in      Sydney Children’s Hospital (SCH).
                                                                                There is still extensive research to
  Essen and graduated from Berlin        SCH plays an important role in
                                                                                be done.
  Free University in 1990. I then        providing an excellent service in
  undertook extensive training in        Paediatric Cardiology. The SCH         What is the most enjoyable part of
  paediatrics and paediatric intensive   works in close collaboration with      your job?
  care and in 1994, I completed my       the Children’s Hospital at
                                                                                Another important aspect of
  PhD in endocrinology.                  Westmead under a state-wide
                                                                                Paediatric Cardiology is “Quality of
                                         umbrella, called NSW Children’s
  I then moved on to train in                                                   Life”. As paediatric cardiac surgery
                                         Heart Service (NSWCHS). Currently
  paediatric cardiology at one of the                                           becomes more and more
                                         we perform about 100-150 open
  biggest heart centres of Europe,                                              successful (success rates up to
                                         heart cases per year. Dr Peter
  Bad Oeynhausen (near Hannover)                                                90%), I see an important part of my
                                         Grant, Head of Department of
  with 450 paediatric open heart                                                work in being a helpful and
                                         Paediatric Cardiothoracic Surgery,
  cases, 50000 adult cases and 500                                              competent partner of my patients
                                         covers the full spectrum of
  catheters per year and 1000 heart                                             throughout their childhood. One of
                                         congenital heart disease, except for
  transplants in 15 years (100 in                                               the greatest joys of Paediatric
                                         heart transplantation and Norwood
  children).                                                                    Cardiology is accompanying the
                                         procedure stage one operations.
                                                                                families and to seeing their children
  I worked at the heart centre from
                                         What have been some of your            grow and become an adult leading,
  1996 to 2003, where I developed a
                                         biggest challenges in your             hopefully, a normal lifestyle.
                                                                                                                        winter 2008

  paediatric cardiology database
                                         current role?
  which was an important tool for
  research and quality management.       My biggest task has been to update
                                         our equipment and improve the                                                                                                
         ♥ ♥ Wil Sparke - member feature story

                                                       his back, due to the fluid build-up in     Wil was to have his first surgery at
                                                       his lungs. Diuretics were prescribed       four weeks of age at Westmead
                                                       to reduce the fluid once more and          Children’s Hospital. It was almost
                                                       we were sent home again.                   seven hours from the time Wil was
                                                                                                  taken out of our hands until we
                                                       Over the next few days, things only
                                                                                                  could see him again. It seemed like
                                                       became worse. Wil’s father and I
                                                                                                  an eternity. His father and I thought
                                                       spent the weekend taking turns
                                                                                                  about going home, but could not
                                                       nursing him in an upright position
              At a tiny two days old, my baby Wil                                                 stand the thought of being too far
                                                       on our chest so that he could sleep
              Sparke was diagnosed with an                                                        away. So we stayed on the hospital
                                                       between his feeds. We were all
              Atrioventricular Septal Defect                                                      grounds, with our mobiles switched
                                                       exhausted. We returned to the
              (AVSD) on the 14th of March, 2006.                                                  on and a beeper the hospital gave
                                                       nursery at the hospital to see the
              Our doctor at Mona Vale Hospital,                                                   us to alert us of when the surgery
                                                       pediatrician, where the doctor
              Dr Cooper told us that he had three                                                 would be over.
                                                       checked him over and said I could
              holes in his heart - one of which
                                                       not take Wil home. He had to be            It felt like a lifetime, reading
              everyone is born with, but closes
                                                       readmitted at Mona Vale Hospital           magazines several times over and
              over after we are born, though Wil’s
                                                       due to his “failure to thrive”.            doing crosswords, followed by
              had not. The holes in Wil’s heart
                                                                                                  staring blankly at each other or into
              could not be healed with medication      It was just awful, we were
                                                                                                  space. Then finally, the beeper
              and thus we were told he had to          devastated. I felt like I had failed Wil
                                                                                                  sounded. Our wait was over. We
              undergo surgery to have them             in some way and should have done
                                                                                                  rushed upstairs to the Paediatric
              repaired. Normally, this surgery is      something more for him. The nurses
                                                                                                  Intensive Car Unit (PICU) to meet
              done at three months of age.             reassured me that there was nothing
                                                                                                  with Dr Nunn and get the
                                                       more we could have done - he was a
              About a week later, we were able to                                                 prognosis. The news was great. The
                                                       very sick little boy, who now had
              go home, but we later returned to                                                   surgery had been successful and it
                                                       jaundice and lost a lot of weight. He
              the hospital to have Wil weighed                                                    was not expected that Wil would
                                                       was also really struggling to feed
              and checked by the pediatrician.                                                    need any more. Dr Nunn was of the
                                                       and slept best on an angle. It was
              Due to his premature birth and his                                                  opinion that Wil would come off the
                                                       decided that he would need to have
              heart condition, he had trouble                                                     medication and lead a perfectly
                                                       his surgery as soon as possible and
              feeding and his weight was very                                                     normal life.
                                                       could not go home in the meantime.
              closely monitored.
                                                       So Wil and I both took up residence        Wil spent a week recovering at
              But the next week, Wil had back          at Mona Vale Hospital, as I was            Westmead Children’s hospital, with
              pressure in his lungs, which had         breast feeding.                            three days in PICU a few days in the
              filled up with liquid, making                                                       high dependency ward. It amazed
                                                       Our surgeon, Dr Nunn explained
              breathing and feeding difficult. Wil                                                us how quickly he bounced back.
                                                       how he would repair the holes in
              was given a one-off dose of                                                         He had a real thirst for life.
                                                       Wil’s heart and surgery was
              medication to reduce the fluid and
                                                       scheduled, but the date had to be          From there, it was back to Mona
              sent home again. The doctor thought
                                                       brought further forward to the 12th        Vale Hospital for Wil to establish
              it best to keep him away from the
                                                       of April, as Wil’s health was              feeding and gain some weight,
              threat of catching something from
                                                       deteriorating faster than expected.        before we could go home. By the
              other hospital patients.
                                                       He was completely unable to feed on        time that day came, Wil was cooing,
              However, two days later, we rushed       his own during the two weeks leading       smiling and laughing at nine weeks
              Wil to emergency at the hospital         up to his surgery and was being fed        old. Wow. So much time had passed
winter 2008

              because he was panting and               my milk through a tube inserted            and so much had happened to our
              struggling to breathe. He could not      down his throat and into his little        gorgeous baby boy. It had also been
              feed properly and was rather             tummy. Monitors checked his heart          a very tough time - we were just so
              unsettled. Wil could not sleep flat on   and breathing around the clock.            relieved to come out the other side

                                                                                                    HeartKids NSW Ph: 02 9294 0800
intact. It was another month before     Edgar Stephen Ward to recover.
Wil came off the medication to          After a six week stint in hospital,
reduce the fluid on his lungs. He       Wil and I returned home. I think the
was now developing normally and         second surgery was much more
started rolling over and eating         traumatic for Wil. By now, he was
solids around 18 weeks of age.          eight months old and becoming
                                        very aware of things, like being
But Wil was having difficulty
                                        hungry or restrained. He was
breathing again several months later
                                        unsettled and crying for the most
and had to go back onto the diuretics
                                        part of 12 hours after his surgery        The leaky valve in Wil’s heart is not
to help reduce the fluid in his lungs
                                        until we could feed him.                  bothering him, so he has been able
once more. After another weekend of
                                                                                  to grow and develop really well.
being unwell and very little weight
gain, Wil was admitted to Mona Vale       A week before Christmas,                What a relief! I truly cannot think of
                                                                                  many things worse than your child
Hospital Emergency then transferred
                                          we got an early Christmas               being so unwell. Thank God for the
to Westmead Children’s hospital to
                                                                                  hospital staff and doctors who
the Edgar Stephen Ward. It was the        present from Dr Cooper.                 perform miracles every day by
9th of October.
                                                                                  helping and caring for our children
To begin with, the doctors tried to                                               when they are sick. We also have
                                        We still had to give Wil quite a bit of
control his condition with                                                        HeartKids to thank for their ongoing
                                        medication for some time. At first,
medication, but it wasn’t enough.                                                 support - it has been invaluable.
                                        he was on four different
After a week, Wil was diagnosed
                                        medications, four times daily. Two        Wil is almost two years old now and
with having a leaking and narrowed
                                        days after we got home from               spends his time doing what all
Mitral valve, seemingly due to
                                        hospital, Wil rolled over all on his      toddlers should be doing - playing
unusual scarring from his previous
                                        own, again. A month or so later, he       with his friends at the park,
surgery. Even the doctors had not
                                        was sitting up on his own and             swimming at the beach and just
expected this to happen; they told
                                        talking. His first word was “dadda”,      loving life. He gives us so much joy.
us it was an extremely rare
                                        followed closely by “mmm-um”.             I cannot put it into words. And like
occurrence. And again, we could
                                        And a few months down the track,          all little boys, Wil is just a little
not go home before the surgery
                                        Wil was crawling too. His health          mischievous and cheeky at times,
took place. It was expected they
                                        just kept improving and at 14             and has a really lovely nature. His
would have to replace the Mitral
                                        months, he started to walk and was        father and I spend our time enjoying
valve with an artificial one.
                                        running soon after. With regular          his company and giving him all the
A few weeks later, Dr Nunn              doctors visits and time, Wil’s            love he can handle. ♥
performed the surgery, taking           medication was slowly reduced.
about four hours from the time we
                                        A week before Christmas, we got an
handed him over to the anesthetist
                                        early Christmas present from Dr
until we met with him again. This
                                        Cooper, who told us that Wil no
time, we went home and came back
                                        longer needed to take any more
just as it had finished. Instead of
                                        medication. At some stage down
replacing the valve, Dr Nunn had
                                        the track, Wil will probably need
repaired the narrowing of it,
                                        more surgery to replace his Mitral
although he was unable to fix the
                                        valve. In the meantime, we are
leak. However, it was minimal and
                                        closely monitoring him. We’re not
                                                                                                                           winter 2008

not expected to cause too much
                                        sure of when he may need surgery,
trouble. We were so relieved.
                                        as it depends on how things change
Wil spent two and a half days in        as he grows and no-one can predict
PICU and then returned to the           that. For now, he is doing well.                                                                                                    
  ♥ Family support news
  ♥                                                                                         ♥ Friends of

              News from Randwick                     News from Westmead
              Hello again to everyone and            It finally feels like winter is upon    The Velo-Cardio-Facial Syndrome
              welcome to all our new families. I     us and this means that some of          Foundation of New South Wales is a
              hope you are not getting any of the    our precious HeartKids will have        registered charity. VCFSNSW is a
              dreaded winter colds.                  to battle with the dreaded
                                                                                             group that consists of individuals
                                                     bronchiolitis. It seems that our
              It was lovely to meet up with Dr                                               with VCFS, parents, grandparents,
                                                     babies are always the hardest hit.
              Christoph Camphausen last month
                                                     If you have any worries about your      siblings and carers of individuals
              at the Sydney Children’s Hospital.
                                                     HeartKid having bronchiolitis           with VCFS and professionals.
              Dr Camphausen was interested to
                                                     (which is caused by RSV), see your
              hear about HeartKids as well as                                                The foundation was founded by the
                                                     family doctor.
              share some of his experiences                                                  late Dr Tony Lipson of the Children’s
              whilst working in Germany and          There has been finally been some
                                                                                             Hospital Westmead, NSW. Dr
              Brisbane. We hope to continue to       good news on the Heart Beads
              strengthen our ties with the           project. The beads have been            Lipson helped parents establish the
              hospital and keep everybody            unloaded out of a container from        first support group in the world for
              informed of what HeartKids is          China and I was very excited to         individuals with Velo Cardio Facial
              currently doing.                       have Nurse Lexie show me the            Syndrome. The foundation has been
                                                     beads and what they stand for.          run for many years by countless
              It was great to see some of our
                                                     There is also the possibility of
              heart parents at the Bexley Trivia                                             volunteers who have given their time
                                                     having the beads made for your
              Night in May. A big thank you to all                                           to help other families also walking
                                                     child, even if they’ve already had
              who came along! It was wonderful
                                                     their surgery. This would be done       this same path.
              to have your support.
                                                     on a donation basis (exact details
              We love to get updates on your                                                 The aim of the VCFSNSW
                                                     are being worked out). I also
              child, so please keep those lovely     should mention that this is not a       foundation is to provide information
              emails and photos coming in and        “girlie” thing - the beads are          and support to families affected by
              let us know how your child is doing.   unisex and will appeal to boys and      the deletion and to provide a
                                                     girls. I am getting one made for        contact register enabling families of
              For those of you that haven’t been
                                                     my 18 year old, as his CHD and          children with similar symptoms to
              our website lately, check out the
                                                     surgeries are part of who he is and
              web forum and post a message.                                                  contact each other
                                                     this will be a tangible keepsake
              While you’re there, if you haven’t
                                                     that he can perhaps one day show         We have just organised our first
              already done so, register for our
                                                     his children.                            “VCFS Awareness Week” with
              monthly e-newsletter as well.
                                                     Don’t forget we have coffee              NSW Health for the 25th to 31st
              Don’t forget to let me know if you
                                                     mornings every first Tuesday and         of August 2008. HeartKids
              are coming into Randwick and I will
                                                     third Thursday of the month in the       families are encouraged to
              try and catch up with you.
                                                     play room of the Edgar Stephens
              Anyone who would like to be put in                                              diarise this event.
                                                     ward and if you’re coming to CHW
              contact with another family in your    for doctor appointments,                For more information contact:
              area or whose child has a similar      procedures or surgery, send me .au
              condition to yours, please give us a   an email and I will try and catch up
              call on 9294 0800 or send an email                                   
                                                     with you and your family.
              to                                                    Postal: 19 Eleanor Crescent,
winter 2008

                                                     Stay warm and well!
              Stay in touch!                                                                 Rooty Hill. 2766.
                                                     Kim Mackie ♥
              Karen Sherlock ♥                       Family Support Coordinator              Phone: 02 9625 3710.
              Senior Family Support Coordinator      0406 424 627.
              0406 424 620.

10                                                                                             HeartKids NSW Ph: 02 9294 0800
♥ Member updates

                                                                                                    Together we can make a difference.

  Zeb Cooper went home with Mum and Dad             five weeks. He was a poster pin-up baby in a     Krystal Crutcher has been in Taree hospital
  to big sister Emily after his latest repair       recent article in the Telegraph. Welcome to      for six weeks with an infection. Her family is
  surgery. He is doing extremely well and           the big wide world, Benjamin.                    very happy to have her home. Keep well.
  settling back into home life. Stay well.
                                                    Findlay Webb came down from Dubbo for            Michael Maccioni finally went home from the
  Angela Richards has been home for quite           his surgery. All went well and he was soon       long term ventilation unit on ESW. Mum
  some time, but wanted to keep everyone on         on his way back home. Stay healthy.              Rowena is ecstatic, as is all his family. He is
  their toes by returning to the Edgar Stephen                                                       doing very well.
  Ward (ESW) with an infection. She has now         Fynn Slade was in for surgery and a model
  made it home and hopefully will stay there.       patient, who zipped through PICU, down to        Abigail Gabriel is having her first birthday
  Keep well.                                        ESW and was soon on his way home to Port         party early June and Nanna and Aunty are
                                                    Macquarie. Keep well                             travelling down from Noosa to attend. Her
  Mateo Pazin is a favourite bouncing ball,                                                          family is grateful that she is here to have a
  back into PICU three times since our last         Daniel Ramirez had his surgery and was           first birthday! Happy Birthday Miss Abi!
  newsletter. Mum Livia is a gem feeding the        home in record time. Stay well.
  staff her mother’s wonderful cakes on a                                                            Tom Collins has had his surgery and is doing
                                                    Ruby Rolfe had her surgery and                   very well. His family are very happy to have
  regular basis. Mateo is getting bigger and
                                                    unfortunately was hospitalised for a lot         him home. Stay well
  stronger and hopefully he’ll be big enough
                                                    longer than expected due to an infection. She
  soon, so that his visits won’t be so frequent.
                                                    finally went home after six weeks to her         Jack Veen had his surgery much earlier than
  Alexandro Smitala spent six weeks in ESW          waiting family including her delighted nanna     expected and has made steady improvement.
  after his surgery recovering from an infection    and great nanna.                                 He is now home with Mum and Dad. Stay well.
  and a couple of complications. He was
                                                    Mattis Otypka was born on the 10th of March      An update on Eva Cole, our Autumn covergirl
  interviewed for an article in the Telegraph
                                                    this year with his repair surgery done a week    from her very happy mother, Sophie:
  and made lots of friends during his time in
                                                    later. After 28 days in CHW, he went home
  hospital. Stay well.                                                                               “Eva was in CHW for a gastronomy and
                                                    for the first time with Mum and Dad.
                                                                                                     surprised everyone with her speedy recovery.
  Riley Brown was in for a catheter and came
                                                    Jacob Thurston had his surgery and was           She spent only two nights in hospital!
  away with good news on the results. It is now
                                                    progressing well apart from some feeding         Amazingly, before our eyes she began to feed
  full steam ahead for his surgery in October.
                                                    issues. He has managed to return home, but       orally - only small amounts so far, five
  Ronan Bishop was recently in for surgery.         is still having a few problems with keeping      teaspoons or so of porridge or soggy
  There were a few stops and starts with his        his feeds down.                                  weetbix. Tonight, she ate half a jar of pears
  recovery, but all is going along well now.                                                         and then about six teaspoons of yogurt!
                                                    Charlotte Day has been unwell with
  Mum Belinda and Dad Stephen are anxiously
                                                    pneumonia and bronchiolitis in Bowral            We are just astounded, and obviously feel
  awaiting the arrival of a baby brother or
                                                    Hospital. We wish her a steady recovery and      completely confident that we made the right
  sister at the end of June. We wish the Bishop
                                                    keep piling on the grams. She’s now at six kg    decision for Eva. She actually opens her
  family well. Ronan - try and sleep through
                                                    - you go, girl!                                  mouth in anticipation of food and enjoys it.
  the night!
                                                                                                     We still can’t get her to drink formula
                                                    Rachel Irvin has been in Canberra Hospital       (makes me wish I was still making milk!) but
  Benjamin Cameron had his surgery aged
                                                    and has now made it home. We wish her a
                                                                                                                                                       winter 2008

  one day old. After a few ups and downs, he                                                         she will drink water and juice from a straw
                                                    steady recovery.                                 sippy cup.
  has finally returned home for the first time to
  be with big sister Amelia in Newcastle after
                                                                                                     Lots of love and big hoorays from the Cole
                                                                                                     household. We are so happy!”                                                                                                                              11
        ♥ New members - welcome to all

                Fiona Robinson & Daniel Bazzano                       Ronita Bali of Smithfield with her                Anna & William Panagopoulos of
                of Miranda, with their heartchild                     children Damien & Reisha. They                    Revesby with Christiana, Harrison
                Lucas, who has Total Anomalous                        are family of Chantelle Prasad, a                 & their heartchild Marrissa, who
                Pulmonary venous return that was                      heartchild.                                       has severe aortic stenosis & mitral
                repaired.                                             Michelle & Daniel Williams of                     valve leakage.
                Lynette Robinson of Bexley and                        Macarthur with Caitlyn, Joel and                  Lisa & Lee Rolfe of Mayfield West
                Vivienne Waterstone of West Ryde,                     their heartchild Hannah, who has                  with their heartchild Ruby, who has
                who are the grandmother and aunt                      an atrial septal defect (ASD) & at                truncus arteriosus, leaky valve & VSD.
                of Lucas Bazzano, a heartchild.                       least four ventricular septal defects
                                                                                                                        Linda & Scott Thurston of
                Simon Jarman & Lisa Kumolee of                        (VSDs).
                                                                                                                        Greystanes with Chloe & their
                Sterling with their heartchild                        Daniela & Richard Gerlach of                      heartchild Jacob, who has aortic
                Simon, who has heart murmurs on                       Baulkham Hills with James,                        stenosis.
                right and left side, flipped back to                  Matthew, Thomas and their
                                                                                                                        Aimee Webb & Ian Edwards of
                front, two ventricles in one, a hole                  heartchild Sarah, who has Double
                                                                                                                        Elanora Heights with their
                and a leaking valve in his heart.                     outlet right ventricle.
                                                                                                                        heartchild Sami, who has a VSD,
                Olga Smitala of Edensor Park with                     Tegan Maree Clarkstone of                         PFO & PDA.
                her heartchild Alexandro, who has                     Morphett Vale, who is an adult
                                                                                                                        Veronique Baffert & Richard
                a heart condition.                                    heartchild and has a double inlet of
                                                                                                                        Otypka of Epping with their
                Jane & Daryl Kercher of Mona Vale                     the left kind, pulmonary stenosis,
                                                                                                                        heartchild Mattis, who has TGA.
                with their children Amy & Thomas.                     an atrial septal defect and dextro
                                                                      cardio.                                           Julie-Anne & Markham Matthews
                They are family of William Sparke,                                                                      of Abbotsford with Georgia and their
                a heartchild.                                         Susan & Peter Bell of Helensburgh
                                                                                                                        heartchild Sienna, who has
                Pat Sparke of Collaroy, who is the                    with their heartchild Logan, who
                                                                                                                        Pulmonary Hypertension and
                grandmother to William Sparke, a                      has a VSD, heart murmur and PFO.
                                                                                                                        PDA closure.
                heartchild.                                           Samantha & Brad Moore of Edensor
                                                                                                                        Louise & David Glen of Randwick
                Lee & Jeff Norris of Toongabbie                       Park with Thomas, Samuel and
                                                                                                                        who sadly lost their heartchild Ruby
                with their children Jayden,                           Ashley and their heartchild who is
                                                                                                                        in June this year.
                Christie, Jack & Haylee. They are                     due to be born in July 2008, who has
                                                                      hypoplastic left heart.                           Edward Jensen & Lorna Gibson of
                family of William Sparke, a                                                                             Merrylands who sadly lost their heart
                heartchild.                                                                                             child Fuhelava in April this year.
                Lyn & Tom Faller of Oakdale, who
                are grandparents to William
                Sparke, a heartchild.

              ♥ HeartKids events calendar July-December 2008
                             1st July Coffee                                                                    15 July            18 July Coffee
                 JULY       morning Westmead                                                               Member E-Newsletter   morning Westmead

                            Busking to the Beat        Tue 5                  5 Aug         10 Aug              15 Aug                21 Aug              25 - 31 Aug
                             Month long event                            Coffee morning   City to Surf     Member E-Newsletter    Coffee morning             VCFS
                 AUG                                                       Westmead                                                 Westmead            awareness week

                            Busking to the Beat       Sat 20th                                                                         Tue 26                29 Sept
                 SEPT        Month long event     Tiny Tickers Ball                                                                                    Printed Newsletter,
                                                                                                                                                       Spring (Ball edition)

                            Busking to the Beat                                                                  15 Oct                                     Tue 28th
                  OCT        Month long event                                                              Member E-Newsletter
winter 2008

                            Busking to the Beat                                                                 15 Nov
                  NOV        Month long event                                                              Member E-Newsletter

                            Busking to the Beat        Tue 9                                                  TBA HeartKids            29 Dec               30 Dec
                  DEC        Month long event                                                                Christmas parties   Printed Newsletter,
                                                                                                                                                        Christmas party

                        Member Communication                   Fundraising/Awareness                     Member Event             Board Meetings

1                      Note: All members are welcome and encouraged to attend board meetings. Call Ryan Payne on 0414 208 509 or venue information
♥ Something sweet

    Channel Seven weather news
    presenter Sara Groen supported Heart
    Felt Desserts with several hungry
    children at Dedes on May 23, as she                                                    Left: All smiles at the dinner
    did a live cross to the restaurant.                                                    table; (l to r) Riley Brown,
                                                                                           Holly Everingham, Charlotte
                                                                                           Meekings and Joel Brown.
    Dedes, in Abbotsford, was just one of
    several restaurants which backed the
    month-long event, including Flying                                                                 Botton left: Sara Groen enjoys
                                                                                                       the company of Joel and
    Fish in Pyrmont; Jonah’s Restaurant                                                                Riley Brown.
    in Whale Beach; Cafe Sydney in
    Circular Quay; Restaurant Balzac in
    Randwick; Pilu at Freshwater in
    Harbord; Le Kiosk in Manly, Rockpool
    at The Rocks, Watermark in Balmoral
    and Alchemy 731 in Mosman.
    $2 from each of the desserts sold at
    these restaurants went to HeartKids.
    Thank you to all those involved! ♥

♥   HeartKids trivia night at Bexley RSL Club
    What a fantastic night we had for our • Dedes                          • Keith & Lyn Urquhart
    Trivia Night at Bexley RSL Club in    • Kikki K                        • Scott Moffitt
    May. We managed to raise $13,683! • Como Butchers                      • Professionals
    Our MC for the night 2UE radio        • Feros Group                    • Beverly Park Golf Club
    presenter John Stanley rattled our    • St George Illawarra            • FRP racing
    brains with four rounds of tricky       Ruby League Club               • Rod Lloyd
    questions, plus fun games to keep     • Mc Grath, St George            • Hogs Breathe Café
    everyone entertained. We were         • Cloud Nine Hair & Beauty       • Mark Somboli
    thrilled with a generous donation of • Beluga, Cronulla                And thank you to everyone that
    $2 000 from the Bexley RSL Club       • Pool Vision                    helped out on the night and
    board, who presented us with a        • IGA Oatley                     beforehand. Mark Somboli from the
    cheque on the night. Thank you to     • Blankie Baby Express           Professionals at Kogarah did a great
    the wonderful staff at the RSL who    • Watershed Premium Wines        job with the live auction and
    ensured our night ran smoothly.       • Cronulla Cinema                Maureen Moffitt was a huge help in
                                          • Stapeltons Quality Meats       sourcing prizes. A big shout-out to
    We couldn’t have done it without the • Lugarno seafood                 our volunteers who sold raffle
    help of our fabulous sponsors,        • Aroma’s café                   tickets and merchandise and
    either. So a very big thank you to:   • Atlantic Seafood               Michelle Dawes, who helped with
    • Lugarno Gourmet Deli                • Olsens Funerals                the decorations and setting up.
                                                                                                                                 winter 2008

    • Fardoulis Chocolates                • Aqua Car Wash                  Lastly, a huge thank you to the
    • Bexley RSL Club                     • Sydney Swans                   wonderful HeartKids staff and to all
    • Liondos                             • Irene Lewis & Dave             of you who attended on the night.
    • Mamm international                  • Fairfax community newspapers   See you at the next one! ♥
    • Coast                               • Captain Cook cruises                                                                                                      1
 ♥ In hospital
      or not well
     Don’t forget members, if              It’s that time of year again to dust off   your friends and family to
     you or someone you know               your sneakers and start training for       sponsor you. HeartKids is a
     is going into hospital or is          the City to Surf. This year’s City to      registered charity of this event, so
     not well, please let                  Surf is being held on the 10th             you can nominate funds to
     HeartKids know by calling,            August. It’s a fantastic way to test       go to your favourite cause.
     writing or emailing us. We            your fitness or just have some fun
                                                                                      You can get a group together,
     can also, at your request,            with the family and get some
                                                                                      encourage your work colleagues
     try to organise someone               exercise at the same time. The race
                                                                                      to sign up, or your local club may
     from HeartKids to come                starts at Hyde Park in the city and
                                                                                      want to enter a group.
     and visit you while you are           finishes at Bondi Beach, where there
     staying in hospital. ♥                will be live entertainment and             All the information is on the official              refreshments available.                    website www.city2surf.sunherald.
     Phone: 9294 0800.                                                       with tips on training and
                                           If you want to take part, you can
                                           also set up a hero page on
                                  and get            Hope to see you there!

♥ Heart Angels

         ♥ We remember Jackson Seaton 16/6/06 - 20/6/06           ♥ We wish to pass on our deepest sympathies to:
                                                                    Edward Jensen and Lorna Gibson and all their
         ♥ Our hearts and thoughts go out to Alisha, Daniel         family in loving memory of their heart angel
           and all the Seaton family in their time of               Fuhelava 8/03/08 – 10/04/08.
                                                                  ♥ Louise and David Glen, and all their family in loving
                                                                    memory of their heart angel Ruby 7/4/08 - 9/6/08

          Where do you                                                tourism, government, IT, fashion, publishing,
                                                                       food.......... there are all sorts of ways that your
          work?                                                        industry segment can support HeartKids – even if
                                                                       it’s just spreading the word by putting a story in
          Most organisations have a                                  the industry newsletter.
          great social conscience and
          give generously to a variety of                          If you require marketing collateral or assistance with
          causes. Why not approach the                             approaching your organisation, please don’t hesitate
          organisation you work for and talk to their Human        to contact Dawn Everingham on
          Resources and/or Marketing Department about what         0420 364 125 or
          you can do to support HeartKids NSW? Your very           People are generous and so taken by our cause, they
          personal stories are often the key to unlocking an       just need to know about us.
          organisation’s heart. Whether you work in a              Spread the word for HeartKids.
          corporate environment, transport industry, travel,

♥ Birthday list                           ♥ HeartKid ★ Sibling

   JUNE ♥                                 JULY ♥                               AUGUST ♥
   Joel Cunningham            01-Jun-04   Brodie Scanlan           01-Jul-02   Samuel Withford         01-Aug-02
   Brendan Pak                02-Jun-94   Thomas Henderson-Smith   03-Jul-04   Ashton Moffitt          02-Aug-07
   Chantelle Singh            02-Jun-06   Jaime Harris             05-Jul-06   Sam Boss                04-Aug-06
   Brody Horton               04-Jun-93   Darcie Lamb              05-Jul-07   Chiara Leonardi         04-Aug-06
   Oska Johnson               04-Jun-07   Miller Orford            06-Jul-06   Brittany Tinker         05-Aug-97
   Abigail Gabriel            07-Jun-07   Flynn Wood               06-Jul-04   Caitlin Tinker          05-Aug-97
   Patrick Torrisi            07-Jun-07   Tekia Harris             11-Jul-06   Emelia Tripp            05-Aug-01
   Sarah Walsh                07-Jun-91   Ethan Colmer             12-Jul-02   Samuel Whiteley         05-Aug-02
   Julia Parkinson            08-Jun-01   Tilly Keeble             12-Jul-05   Matthew Russell-Black   07-Aug-97
   Allanan Brown              12-Jun-05   Kai Stevens              12-Jul-07   Charlotte Snowden       08-Aug-03
   Kaitlyn Klein              12-Jun-02   Samuel Beal-Attwood      14-Jul-96   Erica Griffiths         13-Aug-07
   Felicity Mostert           14-Jun-06   Hayley Erin Mingare      14-Jul-93   Halle Foster            15-Aug-02
   Carter Aplin               16-Jun-06   Isabella Lawrence        17-Jul-07   Timothy Hamilton        15-Aug-03
   Madeline Morley            16-Jun-00   Katie Clare Everson      18-Jul-02   Samara Masters          15-Aug-02
   Adam Carter                17-Jun-00   Jasper Granger           18-Jul-06   Hannah Raynes           18-Aug-06
   Phelicity Jobe             18-Jun-02   Daniel Van Venrooy       19-Jul-07   Priya Sehgal            19-Aug-04
   Jaiden Flemming            19-Jun-97   Zeb Cooper               21-Jul-07   Noah Davey              20-Aug-07
   Adrian De Costa            22-Jun-04   Sophia Hart              22-Jul-05   Holly Everingham        21-Aug-01
   Naomi Thompson             24-Jun-00   Ethan Blackmore          23-Jul-07   Dominic Azzopardi       22-Aug-03
                                          Kameron Norris           25-Jul-96   Ryleigh Bailey          23-Aug-05
                                          Matthew Pinkerton        25-Jul-02   Sophie Agius            25-Aug-05
                                          Liam Mallinson           28-Jul-98   Peter Gooley            25-Aug-04
                                          Joshua Webb              29-Jul-03   William Jeff            26-Aug-02
                                          Charlotte Day            30-Jul-07   Harry Dickinson         27-Aug-06
                                          Vincent Perkins          31-Jul-00   Harry McRorie           28-Aug-06
                                          Ellen Stupar             31-Jul-04   Daniel Ramirez          29-Aug-07
                                                                               Olivia Carey            30-Aug-04

   JUNE ★                                 JULY ★                               AUGUST ★
   Jesse Uhr                  01-Jun-96   Fletcher Wright          02-Jul-01   Heather McAdam          01-Aug-01
   Shaylee Moffitt            02-Jun-02   Madelyne Andrews         03-Jul-03   James Gerlach           02-Aug-06
   Elbikai Hussein            04-Jun-01   Joseph McAneney          05-Jul-00   Zara Elizabeth King     02-Aug-01
   Georgia Clark              07-Jun-98   Niamh Frawley            06-Jul-97   Elizabeth McAneney      05-Aug-04
   Benjamin Lloyd             08-Jun-01   Arabella Jobe            06-Jul-05   Sarah Van Venrooy       05-Aug-99
   Jessica Taggart            08-Jun-94   Hamish Korbi             07-Jul-01   Scott Brown             06-Aug-01
   Benson Grinham             10-Jun-00   Thomas Moore             07-Jul-07   Molly Reckless          06-Aug-02
   Christianna Panagopoulos   11-Jun-02   Gabrielle Chamberlin     08-Jul-99   Layne Peters            07-Aug-01
   William Norris             12-Jun-97   Sarah Stanfield          09-Jul-01   Spencer Bennett         08-Aug-05
   Claudia Camm               14-Jun-01   Zachary Barber           10-Jul-02   Sarah Day               08-Aug-03
   Briony Wallace             15-Jun-91   Sarah Azzopardi          14-Jul-96   Martin Azzopardi        09-Aug-94
   Alice Glen                 15-Jun-99   Jasmine Khan             14-Jul-05   Anthony Davey           09-Aug-93
   Jayden Roberts             16-Jun-99   Johnathon Mathias        14-Jul-05   Joshua Dickinson        12-Aug-00
   Jack Toole                 17-Jun-97   Kelly Manning            16-Jul-97   Sally Fitzsimons        13-Aug-99
   Caitlyn Williams           18-Jun-02   Morgan Campbell          18-Jul-02   Jordan Gibbons          15-Aug-02
   Brendan Ashbourne          21-Jun-04   Christian Dunn           19-Jul-06   Bradleigh Norris        15-Aug-90
   Nathalie Cerritelli        22-Jun-98   Thomas Kercher           19-Jul-03   Hannah Heyhorn          17-Aug-99
   Storm Elliott              24-Jun-90   Luc Brown                21-Jul-07   Crisneil Singh          18-Aug-98
   Dayna Collins              26-Jun-98   Mark Souffy              23-Jul-04   Jessica Thorley         18-Aug-86
   Sophie Keeble              26-Jun-02   Damien Bali              25-Jul-00   Isaac Korbi             19-Aug-03
   Olivia Wardell             27-Jun-04   Shania Everson           25-Jul-98   Ethan Lawrence          19-Aug-04
   Olivia Hammond             30-Jun-05   Bronte Koller            25-Jul-05   Marc Russell-Black      22-Aug-95
                                          Samuel Agius             26-Jul-01   Helena Spanos           22-Aug-06
                                          Louisa Parkinson         26-Jul-02   Emilia Agius            25-Aug-05
                                          Dale Stuart              27-Jul-98   Cole Davey              25-Aug-01
                                          Ellen Waterworth         28-Jul-89   Cooper Wright           25-Aug-03
                                                                                                                   winter 2008

                                          Jesse Masters            31-Jul-94   Seamus Frawley          29-Aug-95
                                          Kaysha Turner            31-Jul-00   Sienna Tripp            29-Aug-07
                                                                               Brooke Lambourne        31-Aug-86                                                                                         1
        ♥ Dougie the superhero

              Douglas D’Amico is a brave five         All the while, Douglas was a very      to see our wonderful cardiologist,
              year old boy with a heart condition     unsettled baby who didn’t feed or      Dr Steve Cooper. The ECHO showed
              who survived a stroke last year.        sleep well and didn’t grow much. I     that Douglas had a heart condition
              Here’s his story from his mother,       went to the GP often and told him      called Tetralogy of Fallot and would
              Rhonda Campbell.                        Dougie was turning blue when he        require surgery as soon as he was
                                                      cried - and he cried a lot!            big enough. Yep, it was a real shock
              Douglas Joel D’Amico was born a
                                                                                             to get the news, but in some ways a
              little early on the 9th of September    When Douglas was four months
                                                                                             bit of a relief, as we knew that
              in 2002. In the middle of the night,    old, I took him and his big sister,
                                                                                             things were not quite right. It was
              at exactly 2.10am, I had an             Rebekah, to stay with their Nonna
                                                                                             then back to Orange to tell the
              emergency cesarean because he           in Orange. Douglas was particularly
                                                                                             family our news and pick up sweet
              was ‘breech - extended legs’, which     unsettled while we were away and I
                                                                                             Rebekah, who was only five. Back in
              meant his feet were up by his head.     took him to Orange Base Hospital
                                                                                             Batemans Bay, we started our
                                                      about 7pm one night. The best thing
              The GP was prepared for Dougie to                                              mission of putting some weight on
                                                      I ever did. Within 30 minutes,
              have ‘displaced hips’ due to the way                                           Douglas and keeping him as
                                                      Douglas was seen to and a full
              he was lying. At only 3080 grams,                                              healthy as we could.
              he was such a tiny wee soul and
                                                       “Yep, it was a real                   Several months later in April, we
              had to be put into a pelvic harness
                                                                                             returned to Westmead Children’s
              when only two days old, so his hip       shock to get the news,                Hospital for the range of tests that
              joints could form properly. The
                                                       but in some ways a bit                Douglas needed prior to surgery.
              harness had to be on all the time
              and when we bathed him once a            of a relief.”                         Claudio and I sat motionless as Dr
                                                                                             David Winlaw explained the
              week, we had to hold his legs in
                                                                                             procedure and all the risks. On May
              position too. Douglas also had
                                                      history was taken. The registrar       2, Dr David Winlaw gave us the best
              problems with this neck. Due to
                                                      gave him the ‘once over’ and called    gift. He performed the tetralogy
              torticollis, the muscles on the left
                                                      another doctor in to check his         repair and preserved the pulmonary
              side of his neck were very tight and
                                                      chest. While the doctors took x-       valve, which we had not expected.
              needed to be stretched gently after
                                                      rays, I was told that there might be   The surgery was a success. Dr
              each feed.
                                                      a problem with his heart - maybe a     Winlaw had such a beaming smile
              Our days in the first few weeks were    hole. I called Dougie’s dad Claudio,   on his face - we were so relieved.
              filled with ultra sounds of his hips,   who was on shift work, as soon as      Even though Douglas had tubes and
              physio appointments for his neck        we got home at midnight.               wires all over him, he looked great.
              and visits to the paediatrician and                                            He was pink and warm for the first
                                                      Two days later, Dad joined us in
              orthopaedic surgeon in Canberra.                                               time. Even though Dougie was our
                                                      Orange and we were off to Sydney
                                                                                             little baby, he was a big boy
                                                                                             compared to most of the kids in
                                                                                             PICU at that time. Douglas had
                                                                                             three nights in intensive care and
                                                                                             returned to the ward for a few
                                                                                             more. We were back to Batemans
                                                                                             Bay seven days post-op.
                                                                                             We were told that the pulmonary
                                                                                             valve would have to be removed at
                                                                                             some stage as it was restricting the
winter 2008

                                                                                             blood flow. We had ECHOS every six
                                                                                             months and Dr Cooper and Dr
                                                                                             Winlaw decided every time that

1                                                                                              HeartKids NSW Ph: 02 9294 0800
leaving the valve in was the lesser    that the risk of any damage was             ‘assessment’ process well. Claudio
of two evils. No matter how many       over. But a couple days later,              and I fought back the tears seeing
times Claudio and I tried to prepare   Douglas was complaining that his            him struggle to do the most menial
ourselves for the news that surgery    right arm was wobbly. By the next           of tasks. It was like a whole new
was required, we always seemed to      day, his right arm didn’t move at all -     world - and everything moved in
come through the cardiology            his right shoulder was down and his         slow motion.
appointments smiling.                  neck dropped to the side. After being
                                                                                   Claudio and I talked it over for
                                       examined by teams of doctors,
                                                                                   hours. We were surrounded by lots
 “Anger, tears, denial -               Douglas was finally sent for an MRI
                                                                                   of very sick children, some of whom
                                       at 6.30pm. Dr Deepak Gill from
 every emotion at once.”                                                           may not get better, and we knew
                                       Neurology confirmed at 10.15pm
                                                                                   deep down that we were lucky ones.
                                       that Douglas had had a stroke and
It wasn’t good news on 28 August,                                                  Things could have been so much
                                       two areas of the brain were affected.
2007. The time had finally come                                                    worse. No matter how many times
that the pulmonary valve needed to     What a blow! Anger, tears, denial -         we tried to reason with our inner
be removed, and surgery was to         every emotion at once. The tears            voices, it was very hard to maintain
take place on October 9. It was all    flowed. We were absolutely                  composure and put on a brave face.
pretty much the same as last time,     devastated and naturally thought
                                                                                   After 11 days in hospital, we came to
only our little boy was now a bright   the worst. Everything always seems
                                                                                   the point where extending our stay
five year old and aware of what was    bad at night when you can’t do
                                                                                   for one hour of occupational therapy
ahead. Douglas has always been so      anything about it.
                                                                                   per day did not warrant 23 hours per
incredibly brave (and compliant),
                                       The next morning, I rang our family         day of eating and sleep issues,
and always said that it was all to
                                       and informed them of what had               challenging behaviour and the lack
“keep his heart healthy, so he could
                                       happened. They had been looking             of support from family and friends.
be big and strong”.
                                       after Rebekah in Orange and made            All the medical staff agreed that it
This time we didn’t feel so lucky.     the drive down to see us as soon as         was best to get Douglas home to
There was a problem in surgery and     possible. We were seen by so many           restore a sense of normality.
Dr Winlaw had to let us know that      doctors. I know they said who they
                                                                                   It was great to return home,
there was a risk of brain damage.      were and what they were doing, but
                                                                                   although our fight for medical
We only understood that there had      I couldn’t register it all. It was all so
                                                                                   services in the bush had only just
been some air ‘in the line’ coming     much for our precious boy to go
                                                                                   begun. Hours of phone calls and
off bypass and we just had to wait.    through. Douglas was having night
                                                                                   chasing every lead finally resulted
                                       terrors, didn’t want to eat and was
This had been my greatest fear. The                                                in some OT support. Visits from Val
                                       really upset about everything
first day in PICU was very intense                                                 of Brain Injury Service (based in
                                       happening to him. He had a
with lots of doctors visiting (I’m                                                 Goulburn) resulted in Douglas
                                       pseudomonas urine infection and
sure there weren’t so many last                                                    getting back to preschool two days
                                       had to go on IV antibiotic. A cannula
time) and ‘doing neuro obs’ all the                                                per week with funding for special
                                       (needle) in his left hand meant that
time. Two days passed and                                                          intervention, while he retrains and
                                           he couldn’t really do anything
everything seemed fine.                                                            strengthens his right arm with
                                             with it either. We went back to
The tubes were coming                                                              gross and fine motor tasks.
                                               toileting, feeding, dressing
out on schedule and
                                                and bathing for a couple of        Dougie has now started “big
Douglas was still the
                                                days until he saw the              school”, although we still take it
lovely and charming boy
                                                 occupational therapists. In       one day at a time and have a long
we knew.
                                                    his true ‘super hero’          road ahead. ♥
                                                                                                                           winter 2008

Back in the ward, the                                   nature, Douglas
neuro checks stopped                                       handled the
and we all thought

♥ Tick, tock, tick, tock...

               20th September,                            (check out page 20/21). Forms can also
               The Hilton Hotel, Sydney                   be downloaded from the website
               Time is ticking on and the committee
                                                          Be quick to get your form in, as tickets
               is working hard to make sure this
                                                          are selling fast.
               year’s Ball is even better than the last
               one! It’s not too late to become           HeartKids is on the hunt for prizes for
               involved, so please contact events         the auctions. If you know of anyone
               manager Mary Bowie on 9427 1440 or         who may be interested in donating a
      and she’ll find      prize, give Mary a call. We are also
               a job to suit you.                         looking for companies who would like
                                                          to sponsor the event. They would get a
               Tickets are now on sale at the special
                                                          table of 10 and some wonderful
               price of $160 per for all of our
                                                          publicity for their company, as well as
               HeartKids members (two per family).
                                                          the opportunity to support a very
               Please just make a note of your
                                                          worthwhile cause!
               membership when sending in the form

                                                                                                A word from our
                                                                                                  HeartKids and
                                                                                                  their siblings.

                                                                                          Here is Tom Collins with his sister
                                                                                          Abby. Tom is having milk via his nasol-
                                                                                          gastric tube while Abby feeds her baby.
                                                                                          As all families know, it is hard for
                                                                                          young siblings to understand what is
                                                                                          wrong with their brother or sister.
                                                                                          Abby is coming to understand things
                                                                                          by role playing with her toys, which her
                                                                                          mother Melanie believes helped her to
                                                                                          understand her brother’s condition.
                                                                                          While the doctors mended Tom’s
                                                                                          “broken heart”, she went on a holiday
                                                                                          with her aunty.
                                                                                          “It is amazing to watch her,” said
 winter 2008


 1                                                                                                  HeartKids NSW Ph: 02 9294 0800
                                    Raising awareness of Childhood Heart Disease (CHD) in kids. Your school CAN make a difference!

                ur photos!
  Check out o

                                                Join Us!
                                                HeartKids is running a new school program
                                                called ‘Busking To The Beat’. Our aim is to raise
                                                awareness of the high incidence of Childhood
                                                Heart Disease (CHD) as well as raising much
                                                needed funds. Will you join us in the fun?

                                                Our Goal
                                                We have developed a program that is fun and educationally
                                                sound at the same time. This program fits into the creative
                                                arts or social justice curriculum area. Some children will
                                                surprise their teachers with their skills and talents. The aim
                                                is that the children have fun doing something that benefits
                                                other children, what a great goal.

                                                So how does it work?
                                                Children will be asked to have a go at busking in the safety
                                                of their own school in front of their peers, parents and
                                                friends. Teachers from large schools will be organising
                                                interclass and/or grade competitions to select the children
                                                to perform on the day. All children are encouraged to have
                                                a go. Organisation may vary slightly from school to school.

                                                Each busker has a pot for donations that are given by the
                                                students, parents and spectators.
A few facts abRT DISEASE
              ou       t

                 EA                             All money raised will go to HeartKids to be put
                e born every da                 towards CHD research programs, clinical services
• Six babies ar           nital
  in Australia with                             and family support.
  Heart Dis  ease.

                y children die
                                                Get Involved
 • Twice as man
                    se than all                 It’s easy - all we need is for your school representative to
   from Heart Disea
   childhood canc                               complete our online participation form, return it to us and
                                                we will contact you and help you make your day a great
                  ren are born with
 • 1 in 100 child                               success, for everyone.
   Heart Disease.

                                                THANKYOU, from the kids!

                                                                                            Want to know more?
   For more information contact: or phone Dawn44232725364M: 0406424511
                                    Contact Maggie Frawley | Programme Manager | T: on 0420 or 125.
q               ♥
q           ♥
q            ♥
q             ♥
q              ♥
q               ♥

    q   q      q    q
         ♥ Volunteer profile

                                                      because HeartKids inspired me to         What are your best and worst
                                                      help more people - office work was       traits?
                                                      no longer satisfying.
                                                                                               My best is the ability to empathise
                                                      What do you like to do in your           with others and my worst would be
                                                      spare time?                              ‘I hate waiting’.
                                                      I don’t get a lot of spare time with     In my next life, I would like to
                                                      studying. I do however, enjoy            come back as...
                                                      reading (a novel and not a text
                                                                                               A bird and have the freedom to fly
                                                      book). I also am involved with the
                                                                                               wherever I wanted.
                                                      police dog unit as a puppyraiser, so
                                                      I spend a lot of time with German        My favourite holiday would be...
                                                      shepherd dogs.
                                                                                               A quiet, mountainous retreat, away
              She’s been up and down the Space        Favourite food?                          from the rat race.
              Probe at Wonderland countless           Ice-cream.                               My idea of a perfect weekend
              times and loves ice-cream and                                                    includes:
                                                      Why is HeartKids important
              rock ‘n’ roll. Meet HeartKids           to you?                                  Lazing on the lounge with a good
              secretary, Vicki Davey.                                                          book and a waiter bringing me
                                                      It provides a service for families
              Can you tell us a little bit about      that they can’t receive from the
              yourself and your family?               health system. Support is vital for      I wish I...
                                                      many people to get through such
              I’m widowed with two boys aged 14                                                Was able to convince the
                                                      tough times in their lives. HeartKids
              and 12 and both are heart healthy. I                                             governments of the world that we
                                                      helps to fill that role by allowing
              live in the western suburbs of                                                   are all one world and we should
                                                      parents to feel less alone when they
              Sydney and I am currently studying                                               stop fighting and senseless killing
                                                      are experiencing some of the worst
              occupational therapy at uni.                                                     and learn to get along and take care
                                                      moments in their lives.
                                                                                               of each other. ♥
              Why did you become involved
                                                      If I could go back in time, I would...
              in HeartKids?
                                                      Like to see exactly how they made
              One of my dearest friends has a son
                                                      those darn pyramids.
              who was born with a VSD and

                                                      List five albums you’d like to take
                                                                                                    When it comes to
              pulmonary atresia. As much as I
              always tried to be there for her, I     with you on a deserted island
              was never able to give as much as I
              wanted. HeartKids needed
                                                      INXS - Greatest Hits;
                                                      ACDC - Back in Black;
              volunteers and I felt as though that
              was the perfect opportunity to give
                                                      Powderfinger - Odyssey no. 5;                  talk to the animals.
                                                      Evanescence - Fallen;
              a little more to others.
                                                      ....and a good meditation CD.
              What do you enjoy about your
                                                      The last time I laughed out
              involvement with HeartKids?                                                            Eloquent design and writing for
                                                      loud was...
              The people. Everyone that works for                                                    marketing communications.
                                                      Last week when my friend from
              HeartKids is there because they are                                                    And proud supporters of
                                                      uni did something to another uni
              compassionate about supporting                                                         HeartKids.
                                                      mate that I can’t really mention in
              people. It’s not about money or
                                                      this mag.
              gratification. It is all out of love.
                                                      The movie that always makes
              What is your background and
                                                      me cry is...
              whereabouts have you worked
              previously?                             I don’t think that there is enough
                                                      space here for me to mention them
              My background is in administrative
                                                      all. I’m a sook.
              work. My favourite job was working in
              the rides admin office at Wonderland.   Best piece of advice I’ve ever
              There was nothing like riding on the    received...
              Space Probe in your lunch break for
winter 2008

                                                      Was from my father, who said
              some down time. I previously served
                                                      “there’s no such word as ‘can’t’.
              on the committee as newsletter
                                                      I think it gave me my determined
              editor and membership secretary.
              Currently, I am studying health

                                                                                                            Call 02 9879 4599
                                                                                                        or email
♥    Acknowledgements                            Yes! I’d like to become a
                                                 supporter of HeartKids...
    THANK YOU ... HeartKids NSW would
    like to thank the following individuals
    and organisations for their generous           Please send me more information about
    contribution since our last newsletter.
    Individual Donors
                                                   HeartKids and in particular:
    Julia Slade
    Susan Cahill
                                                          o Becoming a Volunteer
    Alison Cerritelli
    Robert De Ridder                                      o Leaving a gift in my will
    Fiona Robinson
    Harold & Jean Ewen
    Karmin Lazar
                                                          o Making a regular gift through my bank
    Louise Chamberlin
    Aaron & Erin Strike                                   o Participating in fundraising events
    Margaret Caslick
    Christina Marshall
    Pauline Vosti
                                                   Gifts can be sent to HeartKids NSW Inc.
    Lynette Robinson
    Vivienne Waterstone                            Please complete the credit card authority below and
    Sonia Doyle                                    post to us at address below or fax us on 02 4423 2725.
    Barbara Meie-Williams
    Anna & William Panagopoulos                             HeartKids NSW
    Veronique Baffert                                       PO Box 79, Hunters Hill
    Jeffrey Campbell                                        NSW 2110
    Company Donors
    Vodafone Australia Foundation
    Ritchies                                       If you would like to contact us please
    Westpac Bank Staff
    Actelion Pharmaceuticals
    Express Glass 24 Hr Service                    call     02 9294 0800 or
    Lions Club of Cudal                            email
    Ernst & Young                                  fax      02 4423 2725.
    Australian Medical Association
    Nine Network Australia Pty Ltd
    Price Waterhouse Coopers Australia         Name:
    Advanced Surgical Design & Manufacture
    Identi Kid
    Bexley RSL
    Cudal Bowling Club
    Rotary Club of Randwick
    Trivia Night Donors
    Belinda Malley
    Peter McRorie
    Maureen Riordan
                                               State:                                     Postcode:
    Anton Dworzak
    Jodie Benfield
    Janelle Mostac                             Phone:                                     Fax:
    Tracy Martin
    G.Hosking                                  Mobile:
    Robert Morris
    J Moffit                                   To use your Credit Card (please tick 3 type of card)
    Michelle Dawes
    Fiona Johnston
    Carolyne Hosking
                                               o Visa o Bankcard o Mastercard o Amex
    M. Sombolli
    David Bowie                                Credit Card No: ___/___/___/___/ ___/___/___/___/ ___/___/___/___/ ___/___/___/___/
    Garth Hunt
    Donalda Brown                              Expiry Date:
    Scott Moffitt
    Fundraising Events                         Signature:
    Gavin Anderson & Co - Doing It For
                                                                                                                                     winter 2008

    The Kids                                   Date:
    Barbara Meier-Williams & Paul Williams -
    Macy’s 1st Birthday
    Jackie Pappianiou                          We offer paypal facilities on our website for your convenience.
    Karen Walsh - Anz Wauchope Blue Week                                                                                                          
All of us at HeartKids would like to thank our sponsors and
 supporters for their generous contributions and support