01 A CELEBRATION OF LIFE ABOUT US A Celebration of Life was created in 2002 by parents Chris and Sophie Clarke. Their daughter, Madeleine, was born with a severe case of Strep B and given only a 1% chance of survival when admitted to the Neonatal Unit (NNU) at The Royal Children’s Hospital, Melbourne (RCH). Maddie defied the odds, thanks to the skill and dedication of the Neonatal medical team and is now a beautiful and happy big sister to brother James. In honour of their gratitude to the NNU, A Celebration of Life was created by Chris and Sophie to assist specifically with the fundraising requirements of the NNU and hopefully make possible the equipment, resources and research that helps to make it one of the premier NNU’s in Australia, if not the world. The major fundraising event for the NNU is the Annual Celebration of Life Gala Ball. Now in its ninth year, this event has helped to raise thousands of life saving dollars for the NNU. Each year: • Over 700 babies are transferred to the NNU by the Newborn Emergency Transport Service (NETS). • Over 40% of the babies undergo major surgery. • Over 300 babies receive artificial ventilation via mechanical respirators. • Most of the babies are seen by specialist doctors from the many medical disciplines available only at The Royal Children’s Hospital, Melbourne. • The highly complex paediatric investigative services including MRI, CT scans, digital angiography, fluoroscopy, endoscopy, electroencephalography, metabolic and laboratory tests, echocardiography and cardiac catheter are not available at many other hospitals. OUR ACHIEVEMENTS A Celebration of Life is recognised as a fundraising entity for the NNU at The Royal Children’s Hospital, Melbourne and is coordinated by the RCH Foundation. In the last decade there have been many achievements in the care given to babies in the Royal Children’s Hospital Neonatal Unit. A Celebration of Life is more than just a namesake – it is a statement of truth shared by the NNU team and all those it exists to support today and in the future. Some of the highlights are: HOW WE ARE DIFFERENT FROM OTHER NEONATAL INTENSIVE CARE UNITS The Royal Children’s Hospital Neonatal Unit provides highly specialised care to the sickest newborn infants from all over Australia and the Pacific Islands. It supports and treats a UNIQUE group of babies with UNIQUE needs and is the only Unit of its kind that can assist babies who require treatments not available at other Neonatal Units in Victoria and in some cases, Australia. a rare form of cerebral aneurysm (an abnormality of arteries and veins in and surrounding the brain) by interventional radiology thus providing both survival and favourable outcomes to many babies who in other centres would have died. High frequency oscillatory ventilation (HFOV) is a highly sophisticated form of artificial respiration in which very sick babies are ventilated at breathing rates of up to 900 breaths per minute. The Neonatal Unit was the first Intensive Care Unit in Australia to introduce this technology in 1992 and this was the result of a careful and strategic research and training program. We now run training courses for other intensive care Units around the country. We are the only intensive care unit in the country that employs High Frequency Jet Ventilation. This technology is a life saver for babies with the most severe forms of lung disease. Together with our colleagues at the Royal Melbourne Hospital we have led the way in the management of Our craniofacial surgeons have pioneered a form of jaw lengthening operations for babies born with facial abnormalities such as Pierre Robin Sequence. This surgery has produced stunningly successful outcomes and revolutionized the care of these conditions. Together with our Neurology colleagues we are investigating ways to improve the outcomes for the sickest babies including those with Post Haemorphragic Ventricular Dilation (commonly occurring in very premature babies) and have pioneered the use of MRI technology and bedside EEG monitoring in a neonatal environment. We provide the best outcomes in the country for a condition called Congenital Diaphragmatic Hernia. This is where a baby is born with a large hole in the diaphragm resulting in the intestines being present in the chest thus compressing the lungs. The condition requires the combined skills of neonatologists, nurses, cardiologists and surgeons. Our outcomes for this previously lethal condition are second to none in the world. Survival of this condition provides a normal life for these babies. Our nursing staff has pioneered the management and prevention of pain in sick babies and has led the way in surgical wound care. The nursing staff is continuing to provide the best care to sick infants round the clock every day of the year. We have recently appointed the first Professor of Neonatal Nursing Research in Australia. Our Music Therapist is looking at ways to improve the quality of life on the Neonatal Intensive Care Unit for the sick babies. We provide a home apnea monitoring service for babies who are at risk of and for their parents who are worried about Sudden Infant Death Syndrome. Most of the advances over the years have been made possible by the very strong commitment to research and education by all members of the Neonatal Unit. The best care of the sickest infants cannot occur without the valuable achievements provided through research and education. ROYAL CHILDREN’S HOSPITAL NEONATAL UNIT VISION In order to maintain our mission and achieve our vision we need to: Funds raised are used by The Royal Children’s Hospital Neonatal Unit to: • Attract and retain the best medical nursing and allied health professional staff. 1. Purchase and maintain essential and cutting edge equipment in order to provide the best possible care for the babies. • Establish world’s best practice medical and nursing care of sick newborn infants. • Acquire and maintain essential and cutting edge equipment. The Neonatal Unit will become the benchmark of world’s best practice for the care of the sickest newborn babies and their families. • Improve access to and availability of newborn intensive care beds. ROYAL CHILDREN’S HOSPITAL NEONATAL UNIT MISSION • Improve the space and the environment in the clinical areas. The Neonatal Unit will improve the health outcomes for newborn babies by: • Improve the facilities for the families of the babies. • Providing the best and full range of tertiary and quaternary specialist care for the sickest babies in Australia and internationally. • Improve and maintain the infrastructure and facilities for research. • Providing undergraduate and postgraduate education in medical, nursing and allied health disciplines. • Initiating and conducting research to enhance the clinical care of our patients. • Providing information, health promotion, resources, education and advocacy for the families of our patients. • Improve and maintain the infrastructure and facilities for education. • Update and improve the Neonatal Unit website. 2. Improve the bed availability in the Neonatal Unit by providing and equipping additional intensive care cots. 3. Helps mantain the brand new Neonatal Unit which provides world’s best facilities and environment for the sickest babies and their families. 4. Support ongoing research and education in the Neonatal Unit. 03 DIRECTOR’S REPORT Dr Rod Hunt Dr Rod Hunt Welcome to our first newsletter of 2011, our 10th edition! Special thanks to all those that have made a contribution to the newsletter over the past six years, there would be no newsletter without your stories or willingness to share your NNU experience with our readers…your support in this regard, is valued and appreciated. We have got off to a flying start with a very busy January. First and foremost I am very pleased to announce that we RCH FOUNDATION DONOR DEVELOPMENT MANAGER’S REPORT DONNA ARANYI Happy New Year everybody! Can you believe this is our 10th edition of NNU News? I remember when we first started discussing the need for a newsletter that would help to provide our current/past patients and supporters informed about news and events relating to the NNU...a concept…that first edition was published back in 2006 and seems like such a long time ago now….thank you to all those NNU families, staff, sponsors and supporters that have made a contribution to the NNU Newsletters over the years, without this support, we would never have achieved ten editions! Nor would we have ever gotten this project off the ground without the invaluable support and sponsorship of DNA Artworks, led by Director – Deborah Carter and her team including Erin Newman and Dave Gautier. I have known Deb and worked with her professionally for almost fifteen years and she is one of the most kind-hearted and generous individuals I know…her compassion and generosity are inspiring qualities, as is her humility….thank you SO MUCH Deb, Erin & Dave at DNA Artworks. Special thanks also to Printhouse Group and Mailing Promotions for their ongoing support with our printing and mail distribution needs, you are all truly AWESOME supporters! have recently appointed a Nurse Unit Manager – Ms Jessica O’Dowd. Jessica has been on the Neonatal Unit in various roles for more than 10 years. Her experience in nursing education and newborn intensive care will equip her well for her new position, and we welcome her as part of the management team. Together we continue to work hard on our plans for the move to the new hospital, now scheduled for November 30th. This provides us with an opportunity to review the way in which we provide care to our patients and their families, and to contemplate how best to deliver that care in a new hospital environment. to begin. We have also purchased another BRM3 Brainz monitor with monies donated via an online campaign managed by the RCH Foundation – thank you team! We are incredibly grateful to our donors who make the purchases of these key pieces of equipment possible. Unfortunately, as you may have heard, we are in the throes of a pertussis (whooping cough) epidemic. This disease can be lethal to infants under six months of age who have not completed their immunisations. Previous vaccination for infection with pertussis is not lifelong, and so we are strongly encouraging all adults in contact with young children to have a booster if they have not had one in the last five years and they are not currently pregnant. I will take this opportunity to remind everyone that we will meet again on Thursday September 8th for our next Annual A Celebration of Life Gala Ball at Crown preparations for which are already underway. In the meantime I trust you are well, and I look forward to working with you again in 2011 to ensure the best outcomes for the babies in our care. To further improve the care we provide, we are about to embark upon a new Developmental Follow-up program, which has been funded by the RCH Foundation, and I look forward to reporting on the progress of this initiative throughout the year. With kindest regards, Our new GE Vivid Q ultrasound machine purchased with funds raised at last year’s A Celebration of Life Gala Ball is about to arrive on the unit and training in its use is about The NNU Newsletter provides an excellent insight into the lives of those that share in a NNU experience. From our parents, who find themselves on the unit with their baby, to the staff that work there and our community partners that work so hard to raise the funds that make “excellence” possible, the NNU Newsletter is a bridge connecting all those that members of our NNU Family. The feedback we receive after each edition is always extremely positive with many of our readers explaining how much they look forward to receiving it and sharing it with their friends, families and colleagues….this is testimony to all those that make a contribution to the newsletter, we value and appreciate the openness and honesty of those that write about their lives in and long after their experiences in the NNU. Our 10th edition is sure to provide some informative and entertaining reading! We welcome Jessica O’Dowd’s first contribution as our new Nurse Unit Manager; congratulations Jess on your new appointment! You will read about three of our amazing NNU patients – Jack Gallacher, Chloe Sadler and Allison Whittle; catch up on our major fundraising events including the 8th Celebration of Life Gala Ball and Opera in the Roses and read about two of our INCREDIBLY generous supporters – Brooke Gibbon of Awesome Playgrounds and Kim Muscat of Universal Steel. Don’t miss the advertisement for The Iddly Widdly Fiddly Poo, a fantastic children’s book created by talented author Daniel Corcoran as a fundraising item in support of the Elise Sneddon Foundation’s efforts to raise funds for the NNU. I can personally vouch for the entertainment value of this humorous and quirky read, my niece and nephews LOVED their copies at Christmas time! Get yours today! Fundraising continues to be a priority and this edition of NNU News includes articles about the 2010 Annual A Celebration of Life Gala Ball, which was held on Thursday 16th September at the Palladium, Crown Casino. Our event theme “A Celebration of Love” provided the perfect environment for all advocates of the NNU to come together and celebrate the very special people and work of this incredible department of the RCH. Special thanks to our NNU Gala Ball Event Committee led by Catherine Dr Rod Hunt, FRACP, MMed, PhD Director, Neonatal Medicine Cervasio, Helen Reizer, Shereen Kiddle, Ian Kirkwood, Craig Douglas, Jo Larsen, Marie Popple and Lisa Slaughter who all worked so hard to ensure that our event was such an fantastic success…there would be no Gala Ball without you! Our heartfelt thanks to Matt & Melissa Hetherington for their generosity and participation as our official event hosts and through this experience, we now welcome Matt and Melissa as Ambassadors for the NNU at RCH. Don’t miss reading the incredible speech made by NNU dad Shane Jacobson at this year’s Gala and all other event happenings in this edition of NNU News, Opera in the Roses was another beautiful affair in 2010…Opera in the Roses Event Committee Chair, Judy Hooper, has written a wonderful article about the event for this edition of NNU News. Special thanks to Dame Elisabeth Murdoch AC DBE for her ongoing support as our event Patron and for allowing us to conduct this prestigious event in the grounds of her magnificent home – Cruden Farm. Our sincere thanks to the Opera in the Roses Event Committee led by Judy Hooper, Dermott Tutty, Veronica Kastelan, Sandy Fitzsimmons, Maxine Wain and Sheila Lamont-Stacey for their tremendous efforts in helping to ensure another successful event. More about this wonderful afternoon can be found in this edition of NNU News. I would also like to thank the many NNU families and supporters that have recently contributed funds and acknowledged the work of the NNU – special thanks to the Bates Family, Grehan Family, Fazio Family, Christophidis Family, Costantino-Whittle Families, McLean Family and Real Entertainment & Collectables…we are ever grateful and honoured to be acknowledged in this way, thank you so much! I would also like to mention our good friends at Strathmore Community Branch Bendigo Bank, who visited the NNU prior to Christmas in 2010. Peter McKie, Director and colleagues met with Dr Rod Hunt and Jess O’Dowd to see firsthand what their support of two NICU Cot Sponsorships made possible for the NNU. We are UNIT MANAGER’S REPORT Jessica O'Dowd Hi everyone, In many ways it is hard to believe I am writing a report as the new Nurse Unit Manager for the NNU. After working in a temporary position to cover the role from mid October I commenced in the permanent role on 14th February. I have just entered my 10th year as a nurse in the NNU and have been lucky enough to work in a variety of roles in this time. I first started working in the NNU as part of my Graduate Nurse Program, the NNU was on the 2nd floor back then and I started my nursing career as an enthusiastic but timid Save these Dates! Please enjoy reading this super 10th edition of NNU News – again, special thanks to all those that made a contribution and shared their stories with us. As we head towards Autumn and the cooler months, take care and keep in touch. Will's Memory Annual Dinner Saturday 13th August 2011 Contact Michelle Ferguson willsmemory@hotmail.com or 0407 889 584 Donna XXX Special thanks to Dawn Aranyi, who has been President of the Neonate Mates Auxiliary since that time - along with her fellow Neonate Mate Auxiliary members, Dawn has coordinated and helped to achieve a successful fundraising effort in support of the NNU, which has made the purchase of much Opera in the Roses Monday 7th November 2011 at Cruden Farm Contact Judy Hooper hooper.judith@gmail.com or 0406 369 877 nurse. It was a very steep learning curve for me as I had no neonatal experience and very little exposure to paediatrics. I was extremely well supported and it was not long before I started contemplating a long-term career in the NNU. I then went on to consolidate my skills in the special care nurseries before being given the opportunity to upskill to NICU. I then went on to complete my Postgraduate Diploma in Neonatal Intensive Care Nursing Science and eventually became a Clinical Nurse Specialist. I have always had a passion for education and helping the NNU achieve excellence in the nursing care that we provide for our patients and families. In late 2009 I was given the opportunity to undertake a role as Clinical Nurse Educator in the NNU which allowed me more time to focus on supporting staff in the clinical environment. And now, here I am in a brand new role. As we move forward I also look forward to continuing our work with all of wonderful supporters who work tirelessly throughout the year to provide us with much needed funds that contribute to us being able to provide such a high standard of care. I must say a big thank you to Sheri Waldron who has been my NUM for my entire nursing career and has supported me right through from my first day as a graduate nurse to undertaking the NUM role. I am fortunate that Sheri is overseeing the NNU as part of her role as Director of Acute Operations and Hospital Performance. Her experience and passion for NNU as well as her willingness to support us is vital to our team as we move forward. Whilst the NUM role is something very new to me and will be very challenging, I am excited by the opportunity to lead this amazing team. I feel very privileged to be leading this team as we embark on our journey to move into the new RCH later this year. Ever since I have worked on the NNU I know that I have been part of a very special and unique team. Our nursing team is very committed and passionate in the work they do and are led by fantastic AUMs and supported by an amazing education team. The rest of the team includes our bedside nurses, care managers, nurse practitioner, data nurses, midwives and lactation consultants, all of whom contribute to making the NNU such a special team. Neonate Mates – great mates by name, great mates by nature… Established in 2005, the Neonate Mates Auxiliary is proud to support the life changing work of the NNU at RCH, Melbourne. Annual Celebration of Life Gala Ball Thursday 8th September 2011 at Crown Palladium Contact RCH Foundation re sponsorship/donations/prizes donna.aranyi@rch.org.au or ellie.pateras@rch.org.au re ticketing/bookings Till next time, I would also like to thank Rod Hunt for all of the support he has given me over the past few months and look forward to working with him in the future. The relationship between medical and nursing staff in the NNU is one of our great strengths and something we are all very proud of. I am grateful to all of the NNU Consultants for the support that they have also given me and know that we will continue our great work as a team. Jessica Neo Matnate es X There are so many wonderful people working hard to help raise funds and awareness of the work of the NNU at RCH. I am fortunate in my role at the RCH Foundation to produce this newsletter and work alongside our many loyal and committed supporters, who insist of helping to raise awareness and funds for our NNU- thank you to all those that advocate for the 600+ babies cared for by our NNU each year, we are truly blessed to have your support. XX indebted to Strathmore Community Branch Bendigo Bank for their trust and belief in our work and we look forward to a prosperous and successful partnership in 2011 and beyond. needed medical equipment possible. Dawn has recently resigned from the Neonate Mates Auxiliary and we welcome Judy Aussems in her new role as President. We are deeply grateful to Dawn for her efforts and on behalf of the NNU, wish her well. Make 2011 the year you join the Neonate Mates Auxiliary – for further information or to get involved, please contact Judy Aussems via the RCH Auxiliaries Office on (03) 9345 5188. L-R: Lyn Fl eck, Dawn Aranyi, Judy Aussems an d Jane Stu mpf. Share YOUR story in the NNU Newsletter and help raise awareness of the important work of the Neonatal Unit at The Royal Children’s Hospital, any photos you’d like included. Please ensure photos had an NNU experience inspires hope, comfort Melbourne If you have an inpatient story, family celebration, fundraising event, thank you note or life after the NNU story that you would like share with our readers, please email these to donna.aranyi@rch.org.au along with are high resolution JPEG or TIFF files. and a sense of “community”. Feedback regarding the newsletter from parents in the NNU has been extremely positive and they tell us that reading stories about babies and families that have Please help us continue to support our very special families in this way – we welcome your contributions! 05 A CELEBRATION OF LOVE 2010 Gala Ball Question: What makes for a successful fundraising Gala Ball year after year? Could it be the choice of venue; quality entertainment; THE BEST event hosts; food and beverages offered; a standard of service that is unsurpassed; excellence in production; stunning event themeing creating an ambience that lingers long after the event is over; enticing and unique fundraising activities; THE BEST Event Committee in town; THE BEST supporters in town??????? Answer: ALL OF THE ABOVE! The 9th Annual A Celebration of Life Gala Ball was held on Thursday 16th September at Crown Palladium. Our theme “A Celebration of Love” set the tone for guests to enjoy all that was on offer at this elegant and sophisticated event. The Palladium Ballroom provided the perfect setting yet again for this very special occasion and we are indebted to Ann Peacock and the Crown Charity Committee for their ongoing sponsorship and support of this event – we feel truly blessed and grateful to receive this support. Event Hosts, Matt & Melissa Hetherington welcomed guests into the Palladium Ballroom, which had been beautifully set by our long-time supporters, Function Accessories….each year, guests are heard “oohing and aahing” at the beauty that Paul and his Team create especially for our event each year. This year, a very special place setting gift courtesy Casella Wines was also provided to each guest – thank you Lino! Also included, were some Hershey Kisses which had been kindly provided by our good friends at Costco Wholesale Australia. Special mention also to Ian Kirkwood and his team from Staging Connections, whose outstanding production efforts helped to compliment our theme and also create a warm, intimate ambiance in the Ballroom. Guests were soon seated and enjoying their Entrées when performer extraordinaire – Mark Andrew – took to the stage and gave an unforgettable performance as Austin Powers, reminding us that love is truly all that matters, as only Austin Powers can! This was followed by a very special tribute made by then RCH Foundation Executive Director – Brian Mallon – to Sheri Waldron and Dr Peter McDougall, who had both moved from the NNU to accept Executive roles within the RCH. Brian spoke of Sheri and Peter’s outstanding commitment to the patients of the NNU and their families but also of their “excellence” in practice and how they served as inspirational role models for all those that had the privilege of working alongside them. Brian then welcomed operatic performer Amanda Brock (Allan) to the stage to voice in celebration our thanks to Sheri and Peter for their unbridled support and contribution to the NNU with the song “Time to Say Goodbye”. It was a poignant and fitting tribute to two very special colleagues who will be dearly missed by all in the NNU and its supporters. Brian and Amanda’s tribute was followed by an address by Director of the NNU, Dr Rod Hunt who stressed to the audience the importance and value of fundraising to the NNU. He explained how the funds raised at the Gala Ball would make it possible for the NNU to purchase a GE Vivid Q Ultrasound Machine “A dedicated bedside ultrasound machine will improve patient care through improved access to bedside imaging of the heart and brain, and will facilitate the placement of venous lines in very tiny babies. The acquisition of this machine will help us to achieve our goal of provision of best care to Victoria’s sickest infants”. You can read more of Rod’s speech following this article. Our Special Guest Speaker on the night was NNU dad Shane Jacobson. Shane and his wife Justine had spent time in the NNU with their daughter Pippa and were so grateful afterwards that they held a very special fundraiser to say “thank you” and to celebrate Pippa’s 1st Birthday. Shane’s speech was compelling and we have included it in this edition of NNU News by special request. The feedback I received from NNU parents and our supporters on the night of the Gala was overwhelmingly positive, guests were lining up to meet Shane after his speech, he really was a wonderful representative of what our NNU parents go through during an experience in our NNU. Thank you so much Shane for opening your heart and having the courage to share your personal story with us all, we can only hope to be more mindful and insightful as a result of your wisdom and honesty. It was no easy task following Shane’s presentation, but it was my great honour to publically thank and acknowledge all those that had sponsored a NICU cot or made a significant donation prior to the Gala and help us realize our dream of purchasing the new GE Vivid Q Ultrasound Machine. Special thanks to the following 2010-2011 NICU Cot Sponsors: Strathmore Community Branch Bendigo Bank (2 cots); Domain Charter Group (2 cots); Sunrise Plastics; Hairhouse Warehouse; Warren Larsen & Family; Access Mercantile; MILU Pty Ltd; McKeand McCraith Family; Will’s Memory & Crayola Australia. The response to our call for NICU Cot Donations was overwhelming with all cots being sponsored within days of our invitation being sent out. The following supporters also made a significant contribution to the overall fundraising total on the night and we thank them sincerely: McCarroll Family – in memory of baby Cormac $4,000; Elise Sneddon Foundation – in memory of baby Elise $5,000; Universal Steel $5000; Michael’s Supa IGA $10,000; Winslow Contructors $20,000 and Shane & Justine Jacobson – in celebration of Pippa’s 1st Birthday $22,000. This was followed by a very special DVD presentation which included images of the NNU and in tribute to our supporters for answering the Neonatal Unit’s fundraising call to action. The song “The Call” by Celtic Woman accompanied the footage and was a fitting anthem of thanks to all those that make fundraising for the NNU, their passion and priority. Special thanks to Rob Grant in the Education Resource Centre at RCH for creating this very special presentation and all those that participated, thank you so much! Finally, our Gala Ball Event Committee Chair – Catherine Cervasio, thanked guests for attending and thanked the hundreds of sponsors who had helped to make the event possible. You can read the names of all of those amazing individuals and companies that contributed prizes for our raffle and charity auction, in this edition of NNU News. Catherine and her Event Committee – Helen Reizer, Shereen Kiddle, Craig Douglas, Marie Popple, Ian Kirkwood, Jo Larsen and Lisa Slaughter, had again created a very successful Gala Ball, which raised in excess of $135,000 for the NNU, an outstanding result! My special thanks also to the team of professionals at Crown that work tirelessly to ensure the smooth operation of our event and provide such valuable support and guidance each year – to Carolyn Josephson, Nichole Rowland and Rita Galea, a HUGE THANK YOU as always! With formalities over, guests made their final bids in the charity auction (a highlight being the two amazing Access Mercantile Activate Your Mind Adam & Nicky Simpson Adelaide Crows Football Club Adorn Mineral Cosmetics Amanda Brock Ann Peacock Anthony Koutoufides APCO Service Stations Pty Ltd Arabesque Restaurant Aromababy Natural Skincare Artist Photographer Awesome Playgrounds Babyhood Back to Sleep Baieside Hair Body & Soul Bally Westfield Doncaster Bayside Modelling & Casting Agency Beacon Lighting South Wharf Beaumont Tiles Beauty Mate Belly Art Blitz Publications Blush Photography Boat House Café Bodyography Brad & Kylie Fraser Brent Harvey Brian Mallon Brighton BMW Brodie Young Bronny Bryant Family Build-A- Bear Camilla Campari Australia Canon Australia Carbone Master Tailors Carolyn Josephson Casella Wines Catherine Parker CCLS Invetments Channel 9 Footy Show Chef Latif Chris & Mel Grant Chris Schmidt Co-As-It Italian Language Centre Coco Lounge pieces of play equipment donated by Awesome Playgrounds, some fierce & competitive bidding ensued!) and were tempted to the dance floor by none other than the incredibly talented Matt Hetherington and Band for a two hour entertainment showcase extravaganza!!! Matt’s energy is contagious, he is a supreme showman and judging by our guest’s participation, everyone LOVED Matt and his fantastic band! Matt provided the perfect end to what had been an incredible night… thank you so much to everyone involved…the 2010 Annual A Celebration of Life Gala Ball had truly been a “Celebration of Love”. Donna Aranyi Hope to see you at this year’s Gala Ball, which is already taking shape and looks set to be another fantastic night out in celebration of the NNU at RCH, Melbourne. Como Chocolates Compound Pharmacy Como Consolidated Travel Group Costco Wholesale Australia CPK Partners Crayola Australia Crown Damon Family Dan’s Plants David Bolton David Lindsay David Stuckey Decorator’s Art Designers House Docklands Dimattina Coffee Dimattina Family Divisible By Zero Dizzy Toys D-lux D-Mack’s Hoop Dreams & Basketball Clinics DNA Artworks Dobbin & Drum Toys Dom Bagnato Domain Charter Group Drew Wood Pharmacy @ RCH Dr Leon Dr Rod Hunt Earlybirds Eeni Meeni Miini Moh El Amuleto Elise Sneddon Foundation Emirates Endless Solutions Entanglements ERC at RCH Estee Lauder Etihad Airways Eve Bar Fastrack Racing Fifth Avenue Collection Fiorelli Restaurant Flavours of Yoga Fox Sports Function Accessories Gallacher Family Gary Ablett Junior Gary Ablett Senior Geelong Football Club Genesis Fitness Club Geoffrey’s Gifts Gigi Williams Grandma’s Bottom Drawer Grant Berbner Guest Group Hairhouse Warehouse Home Direct Ishtar Wines Jelly Belly Jenny Daicos Jen’s Place Jess Silk Johnston Jewellers Just Because on Barrabool Katherine Micalizzi Kids Play Shak Kids Rooms Kimberley Palmer Kings Salon Kirby&Kirby Kylie Fraser L’Occitane LA Fit LA Nannies Lawrence Farrugia Learning Curve Little Bird Blue Louie Lee Lydia Atwell Maggie Beer Mahesh Jadu Mark Andrew Matt & Melissa Hetherington McCarroll Family McKeand McCraith Family Meals on Heels Melanie Hercus Mercedes Stewart Classical Acupuncture Michael’s Supa IGA Michelle Davis Milkk PR MILU Pty Ltd Mocha Jo’s Moku Therapy Mozom Jewellery Mrs Globe Australia My Chemist Neonate Mates Auxiliary Nikki Simpson Nooshie Nude Footwear Olivia George Massage Origin Energy Palace Cinema Como Paramedical Skin Clinic Park Hyatt Melbourne Penny Scallan Designs Pet Stock Wendouree Peter Anderson Pia Miller Pocket Rocket Productions Pregnancy, Babies & Children’s Expo Printhouse Group Protect a Bed Puffing Billy Railway Pure Spa Organics Quiz Collection Ralph Carr Management Real Entertainment & Collectibles Retravision Clayton Retravision Ringwood Rita Galea Rob Grant Robert Reitmaier Roses Only Sally Frenkiel Salts of the Earth Schwarz Wine Company Seatonfire Chilli Chocolate Selectrix Sentience Personal Training Shane & Justine Jacobson Shane Warne Foundation Shayne McClintock Slim Secrets Snugglebum Society Restaurant Soft Mats Sonita Singh Staging Connections Stillwell BMW Strathmore Community Branch Bendigo Bank Style Me Over Sunrise Plastics Susan Taylor Tastings Providore The Baby Gallery The Coffee Club The Stitching Horse Bootery Tim Toft Tony Gray Tony Pantano Travel Link Universal Steel Village Roadshow Limited Vintage Photobooths Vintage Princess Vital IT Warren Larsen Wild Earth Wines Will’s Memory / Ferguson Family Wine Growers Direct Australia Winslow Constructors Yapwear Yering Station Winery 2010 COL Gala Ball Event Committee Members: Catherine Cervasio – Chair Craig Douglas Shereen Kiddle Ian Kirkwood Jo Larsen Marie Popple Helen Reizer Lisa Slaughter 2010 COL Gala Ball Event Volunteers: Fiona Ballantyne Sharon Coulston Naida Gordon Jeanette Huybers Jo Huybers Mary Kutaimi John Mulholland Anna Nowak Matthew Nowak Ellie Pateras Lauren Stewart If you would like to attend or support the 2011 A Celebration of Life Gala Ball, please contact donna.aranyi@rch.org.au or call (03) 9345 4510. This year’s event will be held on Thursday 8th September at Crown Palladium. Invitations due June/July – don’t miss this year’s A Royal Celebration of Life Gala Ball! 07 DIRECTOR's SPEECH Dr Rod Hunt - COL Gala Ball 2010 On behalf of my colleagues in the Department of Neonatal Medicine I would like to welcome you all to this year’s Celebration of Life Gala Ball – A Celebration of Love. Donna Aranyi and her RCH Foundation team have done a magnificent job to ensure that we will all have an enjoyable night for the benefit of our Neonatal Unit. Those of you who joined us last year might remember that we raised money for the purchase of a Brainz monitor and this monitor has been in almost continuous use, improving the care that we provide to our patients. And there have been many patients – our busiest year – with over 670 babies being admitted to our unit, 250 of them having surgical procedures and about 100 babies have been monitored with the Brainz monitor. As many of you know, these babies are referred to our unit because they have conditions that need investigation or treatment that cannot be provided anywhere else in Victoria, and sometimes all of Australia. Many of these infants are critically unwell when they arrive and their care involves the expertise of many specialists within the Royal Children’s Hospital. This year we raise money for another piece of equipment – an ultrasound machine dedicated for use on the Neonatal Unit. This machine will allow us to place lines more easily into tiny arteries and veins, to image the brain at the bedside and to ultrasound the heart, providing vital information about the welfare of our patients when they are at their sickest, without the need to move them from their cots. I’d like to take 2 minutes to tell you about Angus – he was born approximately one month early with a condition called Gastroschisis. This is a condition where the bowel sits outside of the abdomen at birth and surgery is necessary to place the bowel back into the abdominal cavity. Angus had a severe form of this condition and required many surgical procedures over what was to become a five month stay at the Royal Children’s Hospital. In fact Angus had at total of 22 general anaesthetics, and Dr Liz McLeod and her surgical team performed 11 surgeries, and 11 dressing changes under full anaesthesia. Many of these were performed on the Neonatal Unit. Many other specialists such as the liver team, the nutrition team and the pain team all invested significant effort providing Angus with the highest quality care. His medical care was coordinated by our new Deputy Director, Dr Amanda Moody. Nearly seven months later Angus went home with his parents Peter and Sarah - who join us tonight - and I’d like to thank Peter and Sarah for allowing me to share Angus’ story with you. When I speak to the parents of the babies we care for, one of the consistent themes is the gratitude they express, not just for the care their children have received, but for the facilities that are available at RCH. They often speak of the COL Parent retreat – an area immediately adjacent the Neonatal Unit, where they can spend time in comfort away from the bedside, but still in close proximity to their sick children. Many conversations take place within the retreat – which looks out over the park, and you might be aware that this retreat was only possible because of 1.3 million dollars of donated money from Celebration of Life. This investment from your donated money makes a real difference to the families who have to access our services. And so we look forward now to a new hospital, which has sprung up next to the existing RCH and is now really taking shape, and we are becoming increasingly busy planning a move, which is scheduled for late next year. My colleagues and I had a look through what will be the new Neonatal Unit a few weeks ago, and were impressed and excited about the size of the new unit, and the significant improvement in facilities that this amazing new hospital will bring, allowing us to continue to care for an increasing number of sick newborn infants. This will truly be a magnificent Children’s Hospital, one of the best in the world. We will continue to look to our supporters through the Celebration of Life, who we hope will continue to raise funds that can be directed towards key pieces of equipment – allowing us to remain at the cutting edge of clinical care and ensuring the best outcomes for our patients. In finishing, there are many people to thank. I would like to thank Crown – our major event sponsor now for 8 years, especially Ann Peacock and the Crown Charity Committee who assist us with sponsorship every year. Staging Connections for their sponsorship and ongoing support – and in particular Ian Kirkwood, one of our NNU Dad’s. DNA Artworks and Printhouse Group for their support with our NNU Newsletter and all event collateral, especially Deb Carter and Erin Newman. Casella Wines for their support with our place setting gifts – especially Lino Blasi and Costco Wholesale Australia for their donation of Hershey Kisses, especially Lori Ponzio. Function accessories for assisting with our event theming and ongoing sponsorship. Matt and Melissa Hetherington for hosting the show, and Matt and his band who you will be hearing from later tonight. Mark Andrew and Amanda Brock for their performance support. Shane and Justine Jacobson for allowing their daughter Pippa to be a poster girl for this year’s event. The COL Gala Ball Event Committee led by Catherine Cervasio, Shereen Kiddle, Jo Larsen, Helen Reizer, Marie Popple, Craig Douglas, Ian Kirkwood and Lisa Slaughter. And Georgie Kirby (another NNU parent) from Kirby&Kirby luxury gifts who has kindly provided the Lucky Door Prize and will be drawing this later this evening. Thanks to all those that have made a contribution to NNU fundraising over the last 12 months – and in particular the Neonate Mate Auxiliary and the Prem Bubs Auxiliary for their ongoing support. I’d like to particularly thank the RCH Foundation for its fundraising support this year – special thanks to Brian Mallon for his contribution to NNU fundraising in his role as Executive Director. We wish him all the best on his retirement and will miss his smiling face around the hospital. We welcome Sue Hunt - our new RCH Foundation Executive Director – we look forward to maintaining a close and fruitful relationship with Sue and the RCH Foundation. Finally thank you very much to those of you who have donated prizes and services to assist with this year’s Gala Ball – and to all of you for attending and supporting our event. Thank you for your attention, I wish you all a very enjoyable evening. 08 Donor Development Manager's Speech Donna Aranyi - COL Gala Ball 2010 Winslow Contructors and finally, Shane & Justine Jacobson for their amazing contributions to serve this purpose. On behalf of the 600 or more babies that will be cared for by our Neonatal Unit and will rely on these cots and access to the latest pieces of cutting-edge equipment such as the Vivid I Q Ultrasound machine – we say a very sincere thank you. We are truly blessed…blessed to be here tonight…. blessed to share our good fortune, kindness and generosity with a very special cause that we have made a conscious choice to support. I know that you have faith in the Neonatal Unit’s ability to extend the best care to our sickest babies because you are here tonight. I know this is also your motivation for supporting us through fundraising. I would like to make special mention of those within our neonatal fundraising community who generously donated funds in support of the 2010-2011 Neonatal Intensive Care Cot Program. The response we received in the lead up to our Gala Ball tonight, was overwhelming, will all cots being sponsored within days of our invitation being sent out. I would like to extend our sincerest thanks to Warren Larsen & Family; Access Mercantile; Richard Stumpf & Sunrise Plastics; McKeand McCraith Family; Will’s Memory & Ferguson Family; Crayola Australia; Milu Pty Ltd; Hairhouse Warehouse, Trish & John Cerini of Domain Charter Group and the Strathmore Community Branch Bendigo Bank for sponsoring TWO cots EACH this year. A fantastic effort and one that means all 12 cots in the NICU are now fully sponsored till September 2011. As we secured these sponsorships, we received calls from some of our supporters who were disappointed to hear that they had missed out on cot sponsoring opportunity but whom upon hearing of our need to raise extra funds to help make the purchase of the new ultrasound machine possible, didn’t hesitate to donate anyway. Special thanks to the McCarroll Family; Kim Muscat and her Team at Universal Steel, the Elise Sneddon Foundation; Michael & Rose Lorenz of Michael’s Supa IGA; 600 or more babies each year treated…that is more babies then there are people in this room tonight. When you think of it that way, it’s pretty clear that the Neonatal Unit’s challenge is an awesome one. I believe these babies deserve the very BEST of everything that is available to them – the best medical care, the best staff, equipment and comfort - whatever it takes to ensure they have the very best chance at life. Their fundraising call to us is one that requests very specific support. Theirs are voices of hope…hope that you as their fundraising advocates, can affect change, create new possibilities and ultimately answer their call. We are proud, that through the support and resources offered by the Royal Children’s Hospital Foundation, we can assist our neonatal donors in their quest to provide fundraising outcomes that make a real difference - we thank you all for your contributions tonight, no matter how small, no matter how subtle they may be. the Royal Children’s Hospital Foundation serves as a “the bridge” - linking supporters and donors to the various departments within the hospital, who require fundraising support. I would like to introduce this year’s DVD presentation which I hope also conveys this message. You are about to get up close and personal with the benefactors of tonight’s special cause. I hope it inspires you, provides encouragement, hope and confirmation that what you have supported here tonight, is worth it. Please enjoy “The Call”, music by Celtic Woman. Special thanks to Rob Grant of the Educational Resource Centre at the RCH for his wonderful production of this year’s DVD presentation – thank you so much Rob. If you have been moved by what you have just seen, are experiencing feelings of gratitude and appreciation or feel inspired to join with us in an ongoing partnership of support for the neonatal unit, then our presentation has been a positive one. Finally, I would like to introduce Catherine Cervasio, Chair of this year’s Gala Ball Event Committee. Catherine is someone who I met professionally many years ago now, but more importantly, she has become someone that I am extremely fortunate to also call “friend”. Catherine and the Event Committee have demonstrated a commitment, passion and love for our neonatal cause that is truly outstanding - my deepest thanks to you all. “The Call” performed by Celtic Woman Sometimes in this life we hear Calling from somewhere Sometimes it is loud and clear Sometimes it’s so softly there Sometimes it is in the sea Sometimes in the sky Sometimes it’s in you and me Sometimes it’s a cry Open your heart I am calling you Right from the very start Your wounded heart was calling, too Open your arms You will find the answer When you answer to the Call Sometimes it is in desire Or in the love we fear When the call is calling us ‘Till the fear will disappear When we have no dance to dance The call is in the song When we have no voice to sing Then the call is calling strong Open your heart I am calling you Right from the very start Your wounded heart was calling, too Open your arms You will find the answer When you answer to the Call Open your heart I am calling you Right from the very start Your wounded heart was calling, too Open your arms You will find the answer When you answer to the Call Open your heart, your heart And you will find the answer To the Call! Thank you for answering the fundraising call of the Neonatal Unit at the Royal Children’s Hospital, Melbourne. 09 Words from a NNU Dad… Speech made by Shane Jacobson at the 2011 Gala Ball My name is Shane Jacobson, I am 33 years old, I have been married to my gorgeous wife Justine for around 6 years. 4.5 years ago we had our 1st child Lily followed almost 2 years to the day by Lachlan.Why do I tell you this - because I am probably just like many of you are or were, an average family man carrying on with life, trying to progress through the corporate ranks at work, beg, borrow and steal to buy a house, then renovate that house and have the standard two kids. As a family, we have always tried to be sympathetic to those that are doing it harder than we are – often when things would not go according to plan my first reaction was “it could always be worse.” To me this was life. On the 12 April, 2009, Pippa, our 3rd child was born and life as we knew it changed. Pippa had breathing difficulties and was rushed to the RCH – for the medical folk here tonight, she had a left Congenital Diaphragmatic Hernia. For the non-medical folk, she would need an operation to remove her intestine from her diaphragm, which was compressing her lung. gives us the textbook medical answer...”well we won’t know until...(Melissa would become a great friend and one of our favourite’s while we are at RCH). Again she is speaking and I'm finding it hard to concentrate - but then I hear Pippa could be in hospital for up to six months! SHIT! I heard it loud and clear but had to question it and unfortunately, I heard it correctly. Six months, this is serious, this is not just an operation, this is, really serious. Six months, how do we function as a family when we already have two kids at home, how will I be able to go to work... and now I think I’m in shock. Normally I am cool, calm and collected, but now I'm finding it hard to talk... and we still haven't even seen Pippa. Well if I wasn't already in shock, I was about to be hit with a truck load of it. And then we walked into this... We arrive at the RCH and are shown to the Parent’s Room. We wait here while the NETS team hand over Pippa to the RCH staff. We are told this will take around 20 minutes. 2.5 hours later Nurse Melissa returns and informs us Pippa had a hard time transporting but is now stable and we can see her. But before we do she tells us a little about her condition. She will need an operation, during this procedure they will either do this or that...blah, blah, blah, no disrespect to Nurse Melissa but by this stage I'm finding it hard to listen and comprehend. I ask her "but then we go home and she is all good?" Melissa Being in a situation like this strips you back to the core - everything you have done up to this point means nothing, it doesn't matter, the only thing that matters is your tiny baby, lying there, very sick and there is nothing you can do to help. Not only are the staff some of the most skilful in the world, in fact for Pip's condition they have the best success rate in the world, they are also part time counsellors and carers for the parents. The staff are like no other in the industry. They are empathetic, professional caring and right up to the most senior neonatologist there is no sense of arrogance or belittling and they give you as much time as you want and let you ask all the dumb questions time and time again. I can't begin to tell you how good the staff are and for that we are forever grateful. So while this came as a shock to us and some of the staff at Cabrini Hospital in Malvern, and while this was extremely stressful, it was just an operation to fix a few issues…or so I kept telling myself. I didn’t necessarily feel embarrassed or ashamed about not knowing where the RCH was, but more an overwhelming sense of guilt – we had 2 kids and although at times it may have seemed like hard work – to quote a 1974 rock song “You ain’t seen nothing yet!” I said earlier, all the material things and money didn't matter anymore. For the next 28 days we lived at the hospital with the doctors, the nursing staff and other parents whom supported us and whom we supported depending on who was having a good day or bad day or sometimes even who was having a good hour or bad hour. Pip's life was in the hands of the staff and the Gods. Whilst babies presenting with this condition at RCH is not uncommon, our case was different in that this condition is generally picked up during pregnancy at the 20 week scan. If so, the baby is usually born at the Women’s Hospital with the appropriate level staff and the NETS team on standby to transport the baby straight to the RCH. As we left Cabrini in Malvern I realized I didn't even know how to get to the RCH - we already had two kids, but they were standard, average children, occasional colds, bumps and scratches - that's it. I am not a very emotional person, other than when I was a kid I can’t ever remember crying. After sitting with Pip for a few hours I venture out to call mum who is at home looking after our other kids. I try to explain this photo to her, I remember hearing mums’s voice trembling, her first words are “Oh shit... I don’t know what to say.” With that I start crying uncontrollably, I couldn't talk, mum was also crying and I had to hang up. I’m sitting on the floor in the corridor of the hospital crying. Unquestionably, this is the lowest emotional point of my life to date. Remember, previous 2 kids, occasional colds, bumps and scratches to this... I still to this day can't explain how that felt. On reflection it was at this point that I realized that all the money and material items in the world meant nothing. I have told Pippa's story, in part, to many of our friends and family, but I still struggle to explain how it felt. As I've said, we already had two kids and I’m sure like many of you, when you see a sad story on TV in relation to kids you feel really bad. But, I have never spoken truer words than this... even if you have kids, you have no idea how it will feel, the feeling of helplessness and how you feel when your own flesh and blood is lying in front of you and there is nothing you can do to help them. Then, add to this the fact that they are a new born baby, they can't talk or tell what hurts - you physically feel sick - no matter what the condition (and there are many worse stories than ours) you can't prepare yourself for this and you can't fathom how it will feel - but believe me you wouldn't wish it on your worst enemy. Pippa’s Neonatologist was Dr Peter Loughnan, a kind and gentle man yet the ultimate professional at the same time... and this was consistent with all the staff we dealt with. All in their own unique way, right from the cleaners through to the top. So Pippa pulled through and left the hospital after 28 days.... we got off very lightly. 1 year on, we had a fundraising event for Pippa's 1st birthday - our friends and family raised over $22,000 which, once contributed to tonight’s efforts will hopefully buy the new Vivid I Q ultrasound machine that Dr Rod Hunt mentioned earlier. Donna, from the RCH Foundation, asks us why we decided to hold a fundraising event... well they say a picture speaks a thousand words... this is our picture... this is Pippa at 12 months... this is what the NNU gave us. Thanks to the staff and the equipment available at the RCH our baby has been given a chance at life and I'm proud to say that she has taken that chance and thrived. Other than the scars, you would never know what happened to her. How can you ever thank someone who gives your flesh and blood life. Yes a big deal has been made out of our fundraising event but seriously put yourself in our shoes and I think the question becomes how could you not do something to give back, how could you not do something to give back to those that gave life to your own flesh and blood. Our story has a happy ending and makes it easy for us to be thankful and gracious. As we learnt in the month we spent at the children's the stories do not always have a happy ending. I think it is really important regardless of the outcome that parents have something and someone they can continue to be involved with... the Foundation gives you that... leaving the hospital you feel guilty... you feel lucky and extremely thankful but you an overwhelming sense of guilt... you make some close connections with staff and other parents and then you leave them there. The Foundation helps provide closure to the whole experience and for that we thank Donna and the RCH Foundation Team. To realise the value of ONE YEAR, ask a student who failed a grade. I bumped into Max Walker at a cafe recently and after having heard him speak before and knowing he had issues with his son, I asked him for some pointers. He said “everyone can make a difference, each in their own special way, tell them about the present.” To realise the value of ONE MONTH, ask a mother who gave birth to a premature baby. So to quote a combination of Alice Morse Earle in 1902, Max Walker and the turtle from the movie Kung Fu Panda... To realise the value of ONE HOUR, ask the lovers waiting to meet. Imagine there is a bank that credits your account each morning with $86,000. It carries over no balance from day to day. Every evening it deletes whatever part of the balance you failed to use during the day. What would you do? Draw out every cent of course! Each of us has such a bank. Its name is TIME. Every morning it credits you with 86,000 seconds. Each night it writes off, as lost, whatever of this you have failed to invest to good purpose. It carries over no balance. It allows no overdraft. Each day it opens a new account for you. Each night it burns the remains of the day. If you fail to use the day’s deposits, the loss is yours. There is no going back. There is no drawing against the “tomorrow”. You must live in the present on today’s deposits. Invest it so as to get the utmost health, happiness and success! The clock is running. Make the most of today. To realise the value of ONE WEEK, ask the editor of a weekly newspaper. To realise the value of ONE SECOND, ask a person who just avoided an accident. To realise the value of ONE MILLI-SECOND, ask the person who won silver at the Olympics. Treasure every moment that you have! And treasure it more if you share it with someone special enough to spend his or her precious time with you. And remember that time waits for no one. Yesterday is history, tomorrow is a mystery, today is a gift. “That’s why it’s called the present”. Thank you to Dr Peter Loughnan and all in the NNU for that present and we can only encourage you all to dig deep tonight to give other parents and children that same present. 12 Sponsor Profile Supporting the NNU – this time it’s personal! An excerpt from a letter received by NNU sponsor and supporter Kim Muscat of Universal Steel… Thanks for your offer to share my story with readers of the NNU Newsletter. I am not sure if you know how I first became involved in showing my support for the NNU at RCH by attending the Annual A Celebration of Life (COL) Gala Ball? Well, two years ago our nephew’s wife gave birth to their second son “Brooklyn”, at Werribee Mercy Hospital by Emergency C section about 6 weeks premature. The doctors realized that there was something wrong and following an x-ray, discovered he had a hole in his diaphragm and all of his organs were squashing his lungs. He was raced over to the NNU at RCH by the NETS team and was a very sick little boy for a few weeks after his surgery in April 2009. He even appeared on the Good Friday Appeal telecast in 2009. When his mum Claudia asked if we would be interested in attending the COL Ball that year, my husband John and I accepted immediately and asked our business partner Steve and his wife to attend as well. We had a fantastic night and had already decided that this would become an annual event for Universal Steel. At the 2009 COL Gala Ball hosted by Steve Bedwell and Jane Flemming, Steve asked guests to stand in the room if they would like to sponsor a Neonatal Cot for 12 months at a cost of $5000 - I looked at the boys and they immediately said “stand up Kim, let’s sponsor one”. It was one of the proudest moments of my life… So, as sponsors, we had already decided that we would sponsor another cot the following year, but as you know you, you had already secured 10 sponsors, which was fantastic news. But we still wanted to donate $5000 towards something just as special and decided to make a contribution towards the purchase of the GE Vivid Q Ultrasound Machine. The Gala Ball was held on Thursday 15th September and our Grandson Jacob was born the following Monday night. Unfortunately, he was a very sick little boy. He had Meconium Aspiration Syndrome and was immediately placed in an incubator at The Women's NICU. It was soon apparent that Jacob had pneumonia as well. By the Thursday night he was still not responding to treatment and he was then placed on a Heart Bypass machine. Friday morning we received the phone call that every parent dreads to hear, that our little Jacob was not responding and we should prepare ourselves for the worst… that our daughter may not be taking Jacob home. To hear the pain in our daughter’s voice and know that there was nothing left to do but to pray, was heart wrenching for us both as parents and as grandparents. One of the specialist doctors from RCH NICU came across to see Jacob and it was decided to move him to the NNU at RCH. The plan was to place him on the Heart and Lung bypass machine and hopefully he will respond to treatment. It took nearly 2 hours for the NETS team to prepare Jacob for transportation and there was no room in the Ambulance for his mum. Our daughter Melissa and her husband David ran from The Women’s Hospital to RCH to meet up with Jacob and his team of doctors. It took another couple of hours to settle him into his new bed and hook up all of the equipment. We still don't know exactly what happened, but we are very grateful that some miracle occurred and Jacob did not need to be put back on the Bypass machine. From that day on, Jacob started to respond to treatment and we began to believe that Jacob might actually make it home after all. The staff of the NNU at RCH were amazing. There was one nurse in particular “Lisa” whose commitment to Jacob and our family was immeasurable….thank you Lisa! The irony of the whole situation was that Jacob needed lots of x-rays/scans and I couldn't help but think that it was ironic that we had only just sponsored the very machine at the Gala Ball, that Jacob had relied on for his diagnosis and future treatment plan. Jacob is now fighting fit and is a real blessing in our lives… there isn't a day that goes by that I don't thank God and the NNU team from RCH for his wellness and good health. We had Jacob christened a couple of weeks ago and to look at him now, you would never know that he was such a very sick little boy when he was born. As a Director's wife of Universal Steel and as a proud Sponsor of the NNU at RCH I would sincerely like to thank the NICU for all they did to save our grandson Jacob's life. We were very proud to sponsor and support the NNU at RCH… and we will continue to support for as long as we are financially able. Donna, looking forward to coordinating our Gala Ball table requirements with you again this year! Yours Truly Kim Muscat Universal Steel Proud Sponsor of NNU at RCH, Melbourne The Iddly Widdly Fiddly Poo – a review posted at www.kids-bookreview.com Yes, some books do make you laugh. Some make you titter. Some make you smile so hard it hurts. But this Iddly Poo - oh boy, be prepared. You see, there's a poo in the house. It's not in the toilet - oh no. Neither the kitchen floor. It's in the bath. That's right - do I sense the nodding of many a parental head right now? But who did it? Was it mum, dad, grandad, the pet fish? And never mind who actually did the deed... what on earth are we going to do with it, before mum goes quietly insane?? Author Daniel Corcoran has penned a hilarious, totally relatable book that parents will cack themselves over (scuse the pun) and kids will be entranced by. I defy any child not to stamp their foot and demand repeat reading after repeat reading of TIWFP. Corcoran's superb illustrations add a depth and humour to the story that haul it out of the great-fun genre and plummet it into the hilarious. And not only is he a really clever guy, he's also a very generous one... Corcoran actually wrote and self-published this book in support of a family friend, in memory of their baby daughter Elise who tragically died after a forceps delivery. The Elise Sneddon Foundation has raised almost $100,000 for the Royal Children's Hospital in the past five years - to be used for much needed equipment for the Neonatal Unit. 100% of the proceeds from The Iddly Widdly Fiddly Poo go to the Neonatal Unit at the Royal Children's Hospital, Melbourne. Get yourself a copy, support an amazing cause (not to mention a talented author) and get ready to laugh. 13 Sponsor Profile Winslow – built on integrity Winslow Constructors visit NNU and RCH Foundation It was our very great pleasure to welcome Group Director and Founder – Dino Strano and his wife Franca, to the RCH Foundation for a very special presentation in August 2010. As a community partner with the Royal Children’s Hospital Foundation, Winslow’s annual sponsorship helps provide for the needs of very sick children who require specialised treatments and medical care. Winslow’s donations via the RCH Foundation are used to help deliver medical excellence in the key areas of technology, training and research, as well as assisting in securing the best medical talent and purchasing of life-saving medical equipment. Supporting the community is an integral part of the Winslow staff culture, and allows the company an opportunity to give back to the community. We were very fortunate to receive a donation of $20,000 from Dino and Franca on behalf of the staff at Winslow, which was presented to Sue Hunt, Executive Director – RCH Foundation. This outstanding donation was contributed towards the purchase of the new GE Vivid Q Ultrasound Machine, which was made possible with funds raised at the 2010 A Celebration of Life Gala Ball. We are indebted to Dino, Franca and all at Winslow for their wonderful contribution, interest and willingness to support the work of the RCH Foundation and in 2010, the NNU at RCH, specifically. Thank you to all those that made a contribution and this fantastic donation possible! About Winslow: Winslow is dedicated to producing quality civil construction works for the residential, industrial, commercial and infrastructure sectors, whilst maintaining the highest level of integrity at all times. Winslow offers clients the expertise, equipment, resources and technology required to complete even the toughest construction project. Winslow’s dedication to quality and excellence, coupled with its knowledge of the intricate issues that surround the industry, ensure that a high level of competency in all areas of project operation and management is achieved on every job, every time. Further information www.winslow.com.au 14 Sponsor Profile Mrs Brooke Gibbon – Awesome Playgrounds In what ways have you supported the fundraising needs of the NNU? Would you recommend supporting the NNU to other businesses? Awesome Playgrounds donated a Rainbow Play Systems unit and we also donated a cubby – there was a great deal of competition on the night for these items, which raised excellent funds for the NNU. Absolutely! Give me an info pack so I can send it on to a couple of business that I know! I know a piece of paper alone can’t translate the message with anywhere the impact of a personal experience, so perhaps I will attach a picture of me having a fantastic time in my dress at the Gala Ball! They will have to come and see what I am talking about! That feeling in the room! How has your involvement and support made you feel? All I can say is that the feeling in that room on the night of the Gala Ball was extraordinary… and I felt that our contribution of prizes to the charity auction, whilst appreciated, was not enough… we want to do more… as a parent, I really had a sense of what those sharing an NNU experience go through… NNU dad Shane Jacobson, who spoke on the night, was inspiring and helped all those present to realize the importance of their ongoing support of this unique and special cause… Who is Brooke Gibbon and what makes her tick? I am a mother of three and I co-own a play equipment business with my husband, Jeff Gibbon. I love that we’ve made our success out of giving children fun and making families happy. Tell us about Awesome Playgrounds. Awesome Playgrounds is a family owned and run business and we are dedicated to supplying families with ‘Awesome’ fun! We sell a huge range of play equipment including Rainbow Play Systems, KBT accessories, Jumpsport and Alleyoop trampolines, TPC cubbies, swing sets and more! If you really want to experience the fun of Awesome Playgrounds, the best way is to come and visit our ‘Awesome’ showroom and fun-park to test jump, swing and slide on our huge range of products. We are located at 97-107 Canterbury Road Kilsyth Vic PH 9095 8060 or visit www.awesomeplaygrounds.com.au – all NNU families & supporters welcome! Are there any major achievements you’d like to share? I’m really proud of the fact that my ambition has paid off. I saw the products that I wanted to sell and I went for it. Now we’re selling the best quality play equipment in Australia and the range just keeps expanding. And doing it all whilst being a wife, a mum of three, and head cleaner! How did you come to support the NNU and RCH? I met one of the mothers, Jo, who is on the Event Committee for the NNU’s Annual A Celebration of Life Gala Ball at the Home Show in Melbourne, and she mentioned fundraising and the upcoming event. I was excited about the opportunity and asked her to email me the details. Jo emailed me later that morning and we went from there! To finish, what’s your favourite quote? I think it would be ‘I’ve learned that everyone wants to live on top of the mountain, but all the happiness and growth occurs while you’re climbing it.’ Brooke Gibbon & Family XXX 15 PATIENT PROFILES Allison Whittle Finding out we were pregnant with identical twins was a huge shock to us - the pregnancy alone was totally unexpected, so finding out it was twins just blew us away. Getting our heads around becoming parents for the first time, and to twins no less, was bewildering enough, little did we know of the journey that lay ahead of us. Our pregnancy was a little stressful, we were already 9 weeks along when we found out, our 12 week scan revealed a high risk for Downes Syndrome which meant a double amniocentesis at 15 weeks. After three of the most anxious weeks of our lives we got the all clear from the test and thought we could relax a little and enjoy the rest of the pregnancy. Unfortunately this was not to be. At our 20 week scan they picked up something wrong with one of the twins hearts, the 24 week scan confirmed a serious heart defect but thankfully the diagnosis of Pulmonary Atresia was downgraded at the 27 week scan to a Critical Pulmonary Stenosis, a thickened and narrowed pulmonary valve which leads to abnormally high pressure in the right ventricle and a thickening of the right ventricular wall. This was all really overwhelming but we decided we had to stay positive, we were told the baby would require surgery as soon as possible after birth and that this would happen at the Royal Children’s Hospital, our baby would need to be transferred to the Neonatal Unit, I’d never even heard of a Neonatal Unit… We really had no idea what we were in for, which was probably for the best and I think it was probably our naivety that saved us at times along the way. At this point the last thing we needed was a premature birth but that of course is exactly what happened. At 29 weeks and 5 days I went into to labour and our little ladies had to be born via emergency c-section. They were just a teeny 1.3kg each. The whole event was surreal. It was like it was happening to someone else and I was just watching the whole thing going on around me. And fast, the whole thing happened so quickly, before we knew it the girls were born, we were parents to these beautiful babies, and then they were whisked away. All of a sudden we had two beautiful babies, in two different hospitals, both in Intensive Care, it just didn’t seem right. It is hard to remember exactly what happened over the first few days, I couldn’t get to the RCH to see Allison, only Gerry and our parents had been over to see her. I spent as much time as I could with Kaitlin at The Women’s. Thankfully Kaitlin was stable but she still had a long way to go herself to get well. Once discharged from The Women’s I headed straight to see Allison at the RCH. I had no idea what to expect when I got there, it was totally overwhelming and our first update on Allison’s condition was just gut wrenching, she was a very sick little girl, they didn’t even know if they could get her stable enough to perform the operation that she needed to save her life. I just felt numb, I just could not comprehend that she was not going to make it, why would we have been blessed with two babies if one was going to be snatched away from us? It just didn’t seem right. her chest, an emergency drain tube went in and the news was grim, we were told that this kind of thing often does not end well. But we stayed positive, perhaps naively, but I just was not going to entertain the idea that we had come this far and Allison was not going to make it. It took four days but the fluid moved off her chest, she was on blood thinners to reduce the clot and she stabilized again, our little fighter was not going to give up. A week had passed and Allison was doing better, the advice we received was to go ahead with the op, a pulmonary valvuloplasty, they were going to blow up a tiny little balloon inside Allison’s pulmonary valve to allow the blood to flow properly. This was all going to happen via catheter. Allison was the smallest baby they had ever performed this surgery on and we were informed of all the risks involved. We made the decision to go ahead but it was hardest thing I have ever done, sending our baby off to surgery, but there was no other option, she would die if we did nothing. I honestly felt numb, there was nothing we could do to make this better, we had to leave our baby in the hands of the wonderful doctors at the RCH and pray. That day would have been the worst day of my life if it had not been for the fact that it also turned out to be the day that I held Kaitlin for the first time. The girls were a week old and of course I had touched them but not a proper hold till this day. I just cried, so happy to be holding one of my babies and just petrified of what my other baby was going through. Thankfully Allison made it through the surgery, Dr Geoffrey Lane had worked, to me what seemed to be a miracle… he’d weaved a tiny catheter into Allison’s tiny heart and blown up some tiny balloons and opened up that tiny little valve that was causing our baby so much grief. There had been some complications but she had made it, she was alive. Her heart had actually stopped during the op but the beautiful Dr Peter Squires bought her back to us, this little lady was a fighter, we were sure of that. Allison’s recovery from the surgery was looking promising, but unfortunately she was destined to face another hurdle, a blood clot had formed in her chest area and it was causing fluid to accumulate in Allison was doing really well, she was off all ventilation, her numbers were all good, there was even talk of her being transferred back to The Women’s to be reunited with her sister who was doing a great job of growing and getting well. But unfortunately Allison had one more set back, the valve had started to close again, we knew this was a possibility but we had hoped it wouldn’t happen, surely she had gone through enough? It was tough sending her off to surgery again but we knew she was so much healthier and stronger this time around, and she did great, the surgery went really well and her recovery time was much quicker and smoother this time around. Our little lady was not going to let this second op hold her back! After 8 weeks in the NNU at RCH Allison was discharged to The Women’s and we finally had our two girls back together, we knew we were on the home straight now. Allison only spent a couple of weeks at The Women’s before being discharged, before her sister would you believe! We were bringing our little miracle baby home. Kaitlin was doing great but was still having some problems maintaining her O2 saturation without cannula oxygen. But thankfully a few weeks later she passed her third trial off oxygen and she came home too. Finally our family was together after a crazy 13 weeks. 16 PATIENT PROFILES Jack Gallacher As insane as this whole experience had been we knew that if you have to go through anything like this there is nowhere else in the world that you would want to be. We are so lucky to have the amazing staff and specialised care that the NNU provides. They are just the most amazing bunch of people, we will never ever forget their kindness and care, they looked after our baby when we couldn’t and they looked after us in more ways than they probably know. We knew that there would never be any way we could ever say thank you enough, so we decided that we had to do something to give a little bit back. And so the idea of having a fundraising event to celebrate the girls 1st Birthday was born and Allison & Kaitlin’s Doubly Delightful 1st Birthday Celebration was in the making. We kind of made most of it up along the way, we’d never organised a fundraiser before, but with some much appreciated guidance from Donna Aranyi at the RCH Foundation, we got this baby off the ground. We organised a silent auction - thanks to our many generous donors and asked our family and friends for donations in lieu of gifts, we were just blown away by the generosity of everyone involved. We managed to raise just over $5,000. I was just so proud of our family and friends and what we had achieved and although we will be forever indebted to the NNU we hoped this would go some way towards helping another family in their time of need. Jack Gallacher Like anyone trying for a baby, Phil and I were ecstatic when we found out I was 7 weeks pregnant. The first couple of appointments went well, and so did my 12 week scan. However, at the 20 week scan, we were told that they weren’t able to see any fluid in the baby’s stomach. They said it could be a positional thing and to come back after a couple of weeks. Again, they couldn’t see any fluid so I was shipped off to the city to a Specialist Ultrasound Centre where I was told that my baby could possibly have a condition called Oesophageal Atresia (aka OA), but this couldn’t be confirmed until the baby was born. They also wanted to do an amniocentesis to discount any chromosomal abnormalities. Here I was – I kept thinking “All I came here for was a scan to show We also owe a massive debt of gratitude to The Women’s Hospital, they did an amazing job looking after Kaitlin and eventually Allison, and they were so understanding and supportive of us when we were running between two hospitals! Lastly we also have to say a huge thank you to our wonderful family and friends, we were so very fortunate throughout this whole ordeal to have their love and support, we would not have made it through without them, they kept us strong when we needed to be for Allison and Kaitlin. Daniela and Gerry Whittle everything was okay, what on earth are these people talking about?”. What went from a seemingly normal pregnancy, transformed into a cocktail of questions and worries. We were shattered. I have to say that both the Royal Women’s and Royal Children’s Hospitals did their best to educate us on our baby’s condition. So after being told that there was really nothing we could do, we carried on as best we could. We buried our heads in literature about OA and that felt like we had some sort of control with our situation. We were also told that our stay in hospital could range from just 2 weeks to a possible 3 months. The latter being unimaginable to us. My pregnancy was fantastic – apart from some extra fluid! At 34 weeks, my waters burst. I say burst as there was such a build up of amniotic fluid that they did just that. I was admitted to hospital and given some antibiotics, and also a steroid injection for the baby’s lungs to help them develop a little quicker. I was induced and gave birth naturally at 36 weeks. And so enters our beautiful son Jack. He was taken straight to the Intensive Care Ward at the Women’s to await transport – a whole 7 minutes to the Children’s. This couldn’t happen until he was stabilised. In his first few hours, we nearly lost him 3 times. He needed a breathing tube and constant suctioning. I was sitting in the labour ward alone my thoughts drifted to our antenatal classes – we were hoping to deliver a healthy baby, breastfeed him, spend our first night together and take him home. After he arrived at the Children’s Hospital – around 7 hours old, they let him rest for a while and then on day 2, he went into surgery so that they could determine the length of the gap and also to insert his gastrostomy feeding tube into his tummy. When Jack was a little over a week old, we were finally able to hold our son – with the help of nurses as there were so many tubes and lines to negotiate. After a couple of weeks, they started feeding milk into Jack’s tube, 1.7mls per hour! We were ecstatic. They gradually increased this as he tolerated it and ended up being on full feeds in no time. I didn’t know it at first, but I would continue to express until Jack was nine months old. After this, we were told that the gap between the top of Jack’s oesophagus and his stomach was one of the biggest they’d seen. Not so good. This meant we would have to wait 3 months before they would operate to repair his oesophagus. So the long wait began. Luckily, we had a room at Ronald McDonald House, right across the street. (What a fantastic place that is). Phil had to go back to work. With no other children to look after, I was able to spend every waking minute by Jack’s bedside. I soon learnt how to do the suctioning that he required every 20 minutes to clear the top of his oesophagus. This went on for 6 weeks. He didn’t seem to mind too much when we did the suctioning, and sometimes he even stayed asleep. Jack had a few “episodes” of falling saturation levels and at one point he even stopped breathing, due to him needing suctioning more frequently that what we were doing so the Doctors decided it would be best if we switched from intermittent suctioning, to a Replogle tube. I wasn’t too keen on the idea of this as it meant that my boy would have a tube in his mouth full time, taped onto 17 PATIENT PROFILES Jack Gallacher cont'd see Jack, and promptly inserted 2 chest drains to try and clear the lungs of the fluid and air that had collected. The drip that he had in his leg had fused so they put one in his neck, but because of the many different medicines he was on, that fused too. So he was rushed to theatre at 10pm on the 8th August, where they inserted a broviac into his chest to cope with everything he was being given. his face. I suppose this is where I worried about the “oral aversion” everyone had been telling me about. Up until this point, he was sucking on his dummy, and we were giving him tastes of breast milk, and Nilstat. But with a tube, it would be harder to suck his dummy, and from my point of view it was hard to look at my baby with tape all over his face. Beforehand, we could wrap him up in blankets and not see any tubes. It was also quite a hassle because all the saliva that he was spitting out would wet the tape around his mouth holding the replogle tube in place, and then we would have to re-tape and this caused Jack a lot of stress. So after 2 weeks the OA specialist nurse had an idea to try the replogle through Jack’s nose. We agreed to try this as his mouth would be clear again. We found this was much easier for Jack to deal with, and we only needed to re-tape once a week. The hospital was really great and sent us a Play Therapist, an Occupational Therapist, a Speech Therapist and a Music Therapist. They visited and played with us, and also gave me very useful tips on how I could interact with Jack seeing as he couldn’t go any further than about 2 metres from his bed. I tried to keep myself occupied during his naps – which involved folding plastic nappy bags and asking trivia questions to the nurses and other parents in the room! Three months passed, and we finally received word that Jack was going to have his operation that we have been longing for. After about 6 hours (by far the longest and hardest wait of our lives), Mr Russell Taylor had successfully taken some of Jack’s outer stomach and used it to make his oesophagus (called an anastomosis). This procedure is known as a gastric repair. The next few days were just a blur, seeing our little boy lying there hooked up to goodness knows how many machines, tubes and medications. He was extra puffy from the morphine. Then on the sixth day after surgery his saturation levels dropped to 50 – the nurse came straight over and pushed the emergency button. I’d heard this buzzer before for other babies and remember thinking how awful it must be to know that sound is an almighty cry for help. Words can’t ever describe how that sound made me feel when I realised it had been pushed for Jack. Doctors and nurses came from everywhere to see what had happened to Jack. By now, he was pretty well known in the ward as a cute, bubbly little boy. Doctors had established that there was a hole in the anastomosis. This had allowed fluid and air to get into his lungs. We’d nearly lost Jack again. We were crushed, he seemed to be recovering so well – we knew this was a huge backward step in the hope of us going home. Our Surgeon came to Another couple of weeks went by and they gradually started his feeds again. Slowly the hole in the anastomosis was closing and things were beginning to look up. They kept up with the Play, Music, Speech and Occupational therapists and this helped the days go by. When Jack was a little over 5 months old – we were told we could actually take him out of the Neonatal Unit for a walk. It took quite a big pram as we had to take all the pumps with us – but we finally managed to show Jack what sunshine and fresh air was like. Okay, it was just outside the hospital cafeteria, and not for very long, but it was the first “normal” experience of having a baby. It was late September and the day finally came when we got to bring our baby home. He was nearly 6 months old. We were terrified! Jack was on tube feeds every 4 – 4.5 hours. He also had a Transanastomotic tube down his nose. This made sure that his oesophagus didn’t stricture (narrow) before his dilatation. We did need to suction him quite frequently and the suction and feed pump machines became regulars along with nappies and wipes wherever we went. There have been a few unexpected trips into the Emergency Department as Jack was stricturing very quickly. At that point during November and December we were having weekly dilatations. We were bathing him only every few days as changing his dressing each time was a task. We also cut holes in all his singlets! This meant that while he had the gastrostomy tube, we could put tape around it and safety pin it to an “anchor”. When we changed to the mic-key, it meant that he could have a button down singlet and we still had access to his tube. Then, just before Christmas, we rushed to emergency again, we were told that Jack had developed a nasty infection in his lungs and needed to stay in hospital and go back on another cocktail of medications and breathing with the help of oxygen. We feared we might not be home for Christmas, but Jack fought on and we got home on the 23rd December. Everyday seemed to be a hassle with trying to feed Jack. He didn’t want anything. We started stretching his bottles out so that he became hungrier before trying – sometimes nothing seemed to work. Then, out of the blue we tried to feed him while he was happy and playing in the bath (with Daddy!) – and - he had a few spoons of pureed apple. Then each day we persevered, some more than others but over time the amounts he was eating increased. We had a couple of good months, our dilatations stretched to fortnightly, and Jack was continuing to eat. However, he still required our round the clock attention with suctioning and still was having nothing to drink. Then at the beginning of March he took another turn and we were again rushed to hospital, this time in an ambulance. The doctors said that over time he has had mild aspirations and that has caused part of his lung to collapse again. So, another hospital stay with medications and oxygen. We were in for 10 days, then about 2 weeks after we left Jack had developed another infection in his lungs. Doctors said this was just a nasty coincidence, but due to Jack’s history he would be more prone to infections and lung problems than most other babies. So Jack soldiered on, and we were home again in no time. We celebrated Jack’s 1st birthday not so long ago. He is such a happy boy, and it seems no amount of hospital visits phase him. If it weren’t for his scars and mic-key, you’d never know the battles he’s been through. We don’t let any of it stop us from doing the things we want to do – I’ve found the perfect place to hang the bottle and pump in all my friends’ houses! So our continuing struggles are Jack’s strictures (we are now at 3 weekly dilatations), Jack is taking medication for reflux, and we thicken his feeds which we find works well. Winter has been a real struggle with Jack suffering from multiple colds – which has him up and coughing for most of the night. Also his drinking – or lack of to be precise! To date, the most he’s ever had from a bottle in 24 hours is about 100mls. He still needs two full formula bottles via his mic-key. It’s something that we just need patience for. I think he has rejected almost every bottle and cup there is on the market. We’ll find the right one – and when we do……… I never knew just how hard, or how long an impact Oesophageal Atresia would have on our lives. To the new parents of an OA baby – it gets better. And soon your days in the Neonatal Unit of the Royal Children’s Hospital will be behind you. You’ll never forget. A few thank you’s to those we won’t ever forget: Russell Taylor – you gave our son an oesophagus. Helen – you gave Heidi sanity, and Jack a voice (and face) to smile at. Trish – you saved Jack when he was at his worst. But most importantly, our family and friends who supported, and continue to support us and visited while we were in hospital. Heidi Gallacher 18 PATIENT PROFILES Chloe Sadler-Gray A mother's reflection... I have three beautiful children and l know l am a lucky person. I appreciate my children and am so thankful that l have them, but getting to this point has been a tough journey. My second child, Chloe is seven years old and is entering grade two at the local primary school. Looking at Chloe she is just like the other children, and she is doing well at school. She is popular and has an amazing personality. She is very loud and talks constantly, yet she is sensitive and very caring. My friends at school know that Chloe has some medical issues but few know or can understand the horror of the first few weeks of her life and the impact this has had on her life and our family. Chloe was born by planned caesarean section in a private hospital with a wonderful medical team there to support us. As far as we all knew Chloe was going to be born a healthy baby as she was almost full-term but following her birth she couldn't breath and was subsequently hand ventilated for an hour while the NETS ambulance came and transported her to the Royal Children's Hospital. When l woke from the operation l was told she may or may not live and being in a very sedated state l just tried to take it all in as best l could. I had a quick look at my new baby, but she was in some kind of a transport cot with so many tubes in her ready to be transported to the RCH. It was touch and go all night and over the next few weeks my husband and l tried to understand the complexity of congenital diaphragmatic hernia, and what it meant for our daughter. We found the hospital environment exhausting and as soon as Chloe recovered from the surgery we left to try and get on with our life. If only we had known that the few weeks we had spent at the hospital would have long lasting affects on us as parents, we would have sort the counselling we both so desparately needed. The staff in the neonatal unit were fantastic. They cared for Chloe and tried to involve me in her care, but it was difficult as she was so sick. I didn't feel as if l had a baby as l didn't get to hold her for a week and the child l saw in the hospital with tubes in every part of her body, didn't look like the baby l thought l had given birth to. The first few years with Chloe were difficult. I cared for her and loved her, but the initial bond was not formed and it has taken all of her short life for us to become close. Memories of life in the hospital haunted my husband and l, and it is only in the last couple of years that l have come to terms with the experience. The unrealised trauma of having a child with a life threatening illness, the sense of being so alone with your grief, seeing other babies in the NNU so sick, and expressing my grief to a mother whose baby had died stayed deep inside me. My husband and l have both had problems dealing with the experience, and it has placed pressure on our relationship because we didn't realise that what we had seen and experienced had affected us so much. We have stuck together and now focus on turning the negatives of our experiences into positives by appreciating our beautiful daughter, working together to face the challenges that are associated with Chloe's medical history and assisting our daughter to reach her full potential. Our family wanted to give something back to the RCH which was personal and which would convey to them how much we appreciate everything they did for our daughter Chloe. For the first few years after Chloe was born l wanted to do something to help the hospital but didn't know where to start. How could l ever repay them? I wasn't up to planning a large scale fundraiser as l have seen others do, but have found that a stall at the local shopping centre selling RCH auxiliary merchandise is a way that our whole family can contribute. It has been therapeutic in helping us recover from the trauma that we all experienced, and as Chloe grows she is enjoying helping organise the stalls and being involved. I approached centre management at the local shopping centre and explained what l wanted to do. They have allowed me to have several stalls a year inside the shopping centre. I order my stock through the auxiliaries office at the RCH about a month before the stall and they send it to my home in boxes a few days before the stall. They also send tablecloths, signage and a price list. I set up my own tables in the shopping centre, make sure l have enough change and off we go. I get a fantastic reaction from people who love to support the hospital. We sell tote bags, mugs, aprons, art smocks and other goods from the RCH auxiliaries, and my mother also knits teddy bears which l sell and they are very popular. I advertise the stalls at the local school and always get a lot of support. When the stalls are over l box up the stock, bank the money into the RCH bank account provided and take the left over stock back to the auxilliaries office. Everyone there is so friendly and supportive and have helped me in knowing what to order. In our families most recent stall after the auxilliaries office took costs etc out of my takings, over $1000 was forwarded to the Neonatal Intensive Care Unit who we like our funds to go to. We would like to thank all of the people who do understand and who have been there from the start, including the many doctors, medical professionals, family members and friends. To those of you who have presented challenges to us because you do not fully understand, we hope that being involved with our family and getting to know our gorgeous daughter Chloe has enriched your life in some way. When you are once again faced with making decisions that affect a child who has a medical condition that you are unfamiliar with, you may endeavour to approach it with greater empathy and seek to understand before forming an opinion. A special thankyou to Donna Aranyi who has been a constant source of support to our family and also to Dr Joe Mel who has guided us in caring for Chloe. From the moment Chloe was born he has done everything he can to support her medically including managing the many unusual and complex medical conditions Chloe has presented with, always returning my telephone calls and treating our family with the care, respect and understanding that we desperately needed. Our family is now looking to the future and we feel proud of the way we have worked through the challenges of life with a child who has had a congenital diaphragmatic hernia. When we were in the NNU with Chloe a Doctor there told us that it was like our family had been struck by lightening, but we had survived. We are so lucky to have Chloe and she brings joy to our family and those around her every day. 21 Ten editions Inspiring NNU reading… CELEBRATING OUR 10TH EDITION - March 2011 Thank you to the following individuals, families, friends and sponsors for their support & article contributions since 2006:- Edition 1 - Autumn 2006 Dr Peter McDougall, Sheri Waldron, COL Gala Ball ’05, Kimberley Mannix, COL Auxiliary, Littleford Family, Underwood Family and Mezzatesta Family. Edition 2 - Summer 2007 Edition 4 - Summer 2008 Robyn Smith, Dr John Mills, Helen Shoemark, Danielle Kressner, Variety, Dr Peter McDougall, Sheri Waldron, Pretty Sally Riding Ranch, COL Auxiliary, Robert Greenberg, COL Gala Ball ’06, Peuschel Family, Boeckman Family, Overdyk Family, Mullan Family, McKay Family, Micallef Family, Dr Rod Hunt, Elise Sneddon Foundation, DNA Artworks and Aromababy. Dr Peter McDougall, Sheri Waldron, Warren Family, Michael’s Supa IGA, Con Sakkas & Safeway, COL Gala Ball ’07, Gawne Family, Danny Smith, Will’s Memory & Michelle Ferguson, Rob & Kerryn Sneddon, Melanie Carson, Rebecca Grieve, Neonate Mates Auxiliary, Sportz3, Kirby Family, Maat Family and Dr Paul Ekert. Edition 3 - Autumn 2007 Dr Peter McDougall, Sheri Waldron, Telstra Foundation, Colonial First State Property Management, Anthony Koutoufides, Sue Falzon, Geoff & Leanne Quirk, Aromababy, Carson Family, Rubeli Family, Hassett Family, Dr Amanda Moody, Sally Ann Burns and Mr Russell Taylor. Edition 5 - Autumn 2008 Dr Peter McDougall, Sheri Waldron, Neonate Mates Auxiliary, Paul Grixti & Sue Falzon, Stonnington Financial Services, Nelson Alexander Real Estate Foundation, Will’s Memory, Hameister Family, Melbourne Tigers, Gyzen Family, Port Phillip Prison Youth Unit, Ronalds Family, Kurzke Family, Wyer Family, Roth Family, Funcke Family, Marum Family, Singleton Family, Angela Power and Narelle Miller. Edition 6 - Summer 2009 Edition 8 - Autumn 2010 Edition 10 - Autumn 2011 Dr Peter McDougall, Sheri Waldron, Neonate Mates Auxiliary, Catherine Cervasio, Aromababy, COL Gala Cocktail Party ’08, Will’s Memory, NNU RUKrafty Group, Melbourne Tigers, Opera in the Roses ’08, Life’s Little Treasures, Australian Graphic Design Association, Jennine Rielly, Thomas Family, Stewart Family, Warren Family, Edward Hooper, Helen Shoemark, Michelle Bampfield and June Harverson. Dr Peter McDougall, Sheri Waldron, Rotary Club of Rosebud, Jumping 4 Joy, Ceniti-Porter Family, Ethan Ross, COL Gala Ball ’09, Rob & Kerryn Sneddon, Brian Mallon, Popple Family, Israel Family, Opera in the Roses ’09 and Babywedge. Dr Rod Hunt, Jessica O’Dowd, COL Gala Ball ’10, Shane Jacobson, Whittle Family, Gallacher Family, Sadler Family, Kim Muscat - Universal Steel, Brook Gibbon - Awesome Playgrounds, Opera in the Roses’10, Winslow Constructors, Iddly Widdly Fiddly Poo, Neonate Mates Auxiliary, Sophie Evans and Janet Guerin. Edition 7 - Autumn 2009 Dr Peter McDougall, Sheri Waldron, Lakeland Design, Corporate Grape, Landell Designs, Charlotte Duncan Writer’s Award 2009, Ashley’s Guitar by Stella Tarakson, Neonate Mates & Prem Bubs Auxiliaries, Ceniti-Porter Family, Thompson Family, Pritchard Family, Scentiments, Michael’s Supa IGA, Sharon Downes, Kate Graham and PRAISE Australia. Edition 9 - Summer 2010 Dr Rod Hunt, Sheri Waldron, Neonate Mates Auxiliary, nabGroup Credit Risk, Jacobson Family, Stumpf Family, Sunrise Plastics, Clifford Family, Charlotte Duncan Writer’s Award 2010, The Secret . of My Success by Sharon Hammad, Damon Family, Fifth Avenue Collection, Abbie Guzzi and Celina Derose. ry a rs ! e iv s!! n n ew A y N Aranyi wsletter, p p NU Donnanatal Ndeation a n o H N Ne ou F r, ito RCH Ed 23 Opera in the Roses Cruden Farm 2010 This highly anticipated and now annual event, “Opera in the Roses”, honours the work of the Neonatal Unit of the Royal Children's Hospital. The November 2010 luncheon was staged, once again in the delightful setting of the celebrated gardens of Cruden Farm, Langwarrin, the home of our loved patron, Dame Elisabeth Murdoch AC DBE, and for a cause that is so close to her heart. The ambience of this setting with the marquee on the lawn between the lake and the Rose Garden and our wonderful young performers, highlighted a memorable day. Opera in the Roses was created to combine the twin interests of a love of music and a deep commitment to the support of the Neonatal Unit, and the inaugural luncheon was held in 2008. The funds raised from this event provide "excellence" by way of support for the Neonatal Nurse Practioner role within the Neonatal Unit. Sincere thanks and appreciation to the Royal Children's Hospital Foundation, and in particular Donna Aranyi, along with her Foundation colleagues, Ellie Pateras, Lauren Stewart, Rachael Hurley and Fiona Ballantyne, who all assisted on the day. This year we have also welcomed Sue Hunt as the new Executive Director of the Foundation, and look forward to working with her in her new role. The day began, so appropriately with chamber music from the talented young Melbourne University students of the Zellwood Quartet, as guests were greeted in the beautiful garden amongst trees and bushes laden with flowers, and sipped champagne, courtesy of our long time event partner - Casella Wines - in a delightful prelude to the main event of the luncheon. Our multi talented Dermott Tutty, in his multiple roles as Committee Member, Accompanist, and in this case, MC for this event, introduced my welcoming address as Chairperson of the “Opera in the Roses” event. I thanked the event committee members Dermott Tutty, Maxine Wain, Sheila Lamont-Stacey, Sandy Fitzsimmons and Veronica Kastelan who have planned and worked throughout the past year to ensure the success of this event. This day, however, owes so much to our sponsors, and I thanked and expressed our gratitude to all those who had made a contribution to this wonderful event especially our major event partners:- Casella Wines, Yamaha Music Australia, Opera Australia, DNA Artworks, Universal Music, Axia Modern Art, Table Matters, Over the Top Marquees, Myles Audio Visual, Orient Express Travel Group, Roses Only, Function Accessories, Boon Roses and all those whose names appeared in the “Thank You “ pages of the event program. None of the day’s special offerings would have been made possible without the hard work and efforts of so many contributors and supporters. Sue Hunt, Executive Director, RCH Foundation was then introduced, and expressed a message of thanks on behalf of the Foundation. It should be added that everyone who has been involved in “Opera in the Roses,” in whatever capacity, has been motivated above all, in the cause of these tiny, fragile babies and inspired by the skill and dedication of the doctors and nurses in the Neonatal Unit and a wish to make some kind of contribution to assist in their care. Dr. Rod Hunt, Director Neonatal Medicine at RCH, was then introduced as Special Guest Speaker, and made a speech that seemed to touch every member of the audience as he spoke very movingly of the work of the Unit. My own son, Edward Hooper who was a patient twenty-five years ago in the Neonatal Unit, then introduced a very special DVD presentation that introduced our guests to some of the babies under care in the Neonatal Unit, with “Love is in the Air” from “Strictly Ballroom” as background music. This seemed to go straight to the hearts of the audience, and some guests had tears in their eyes as they watched. It was this segment in particular that brought home the importance of this financial support. Edward then returned onstage to announce our new venture for this event, The Opera in the Roses “Baby Bonus Scheme.” Special thanks to those guests that made a further contribution, greatly appreciated! The luncheon, once again, was superb, and prepared by our Head Chef, Tim Menger of Table Matters, and complemented by our sponsor Casella Wines with their Yellowtail selection of sophisticated wines. Our guests were entertained by some brilliantly talented young artists, including Phoebe Russell, Double Bass, aged sixteen who has performed internationally, the now famous Melba Scholarship holder Siobhan Stagg, who performed a stunning rendition of an exciting showpiece from Handel's "Alcina", followed with a superb duet with Frere Byrne. The other talented young performers were the soloists Tim Reynolds and Brenton Spiteri, and the young chorister from the “National Boys Choir of Australia,” Ethan Flora. The musical entertainment continued with the international concert pianist Mark Gasser, whose performance at this event was sponsored by Yamaha. His playing has been acclaimed as “scintillating and poetic; totally at one with his instrument,” and guests were treated to a marvellous performance of the “Warsaw Concerto”. Alex Budd, Melbourne Manager for Opera Australia, spoke of the programme of performances for the current season and the role of Opera Australia in nurturing outstanding young artistst. Nicole Car, the brilliant young soprano from Opera Australia, was then introduced and performed three items, including a very beautiful rendition of “Summertime” from “Porgy and Bess.” "Thank you, Dame Elizabeth, for sharing your beautiful Cruden Farm with us for this magical event." Judy Hooper Chairperson, Opera in the Roses Contact: hooper.judith@gmail.com The last item in the programme, most fittingly, was Nicole Car, and “The Last Rose of Summer” with Mark Gasser as piano accompanist. It seems impossible to convey in words the special and unique pleasure of this day. Perhaps an indication is the large number of guests who already wanted to book tables for the 2011 event. We can now assure guests of the same delightful setting and a firm date for “Opera in the Roses,” of Monday 7 November, 2011. Alan Shorland Angelface Anthony Knight Anthony White Tallis Foundation ANZ Bank Volunteers Armadale Cellars Aromababy Artist Photographer Australian Institute of Business & Technology Axia Modern Art Beachcomber Café at St Kilda Sea Baths Beauty Mate Beleura Mornington Ben Wrigley Beyond Coconut Water Boon Roses Bose Store Cambellwell Brenton Spiteri Build A Bear Cadbury Carbone Master Tailors Casella Wines Catherine Cervasio Cedel Christopher Chronis Coates Hire Comme Corporate Grape Corporate Grape SA Costco Wholesale Australia Cruden Farm Staff Dame Elisabeth Murdoch Deborah Carter Declan Hallinan Divisible By Zero DNA Artworks Domo Dori Parkin Douglas Stewart Dr Rod Hunt Edit Golder Ellie Pateras Erin Newman Essendon Football Club Farmer Joe Fashion Accessory Bureau Fiona Ballantyne Fleischer Cakes Frere Byrne Function Accessories Genesis Fitness Gerry and Sharon Phillips Grange Furniture Health Information Pharmacy Hennie Watts Ian Davey Beaconsfield Jane Novembre Jenny Stanley Johanna Scholes Kasbah Moroccan Imports Larsen Family Lauren Stewart Lavazza Lilly & Lolly Lino Blasi Little Bird Blue Liz Pratt Luxe Margot Melzak Mark Gasser Melbourne Opera Metropolitan Golf Club Michael Shade Michelle Olinder Mim Ambrosio Moku Therapy Moochie Moo Morning Star Estate Mornington Peninsula Patchworkers Inc Maxs at Red Hill Estate MOTTO MYER Myles Audio Visual Hire National Boys Choir of Australia Nicholas Selman Nicole Car Noelene Hammond Designs Opera Australia Organic Trading Company Orient Express Travel Group Over The Top Marquees Paramedical Skin Clinic Peter Casey Pino Marmina Portsea Hotel Pulse Pharmacy Pure Spa Rachael Hurley Ralph Carr Management Rankins Roses Red Balloon RMJ Brands RogenSi Roses Only Rotary Club of Frankston Sunrise Roz Zalewski ScotchArts Shaun McMahon Siobhan Stagg Slim Secrets Table Matters Tim Menger Timothy Reynolds Tipsy Toes Toddler Tucker Tom & Julie Manwaring Tree Top Toy Shop Trevor Thomas Unilever Universal Music VCGR Waterfront at Station Pier Willett Marketing Wood Pharmacy at RCH Yamaha Music Australia Yering Station Winery Zellwood Quartet Zetta Florence Our deepest thanks to the 2010 Opera in the Roses Event Committee:Judy Hooper – Chair Dermott Tutty Maxine Wain Sandy Fitzsimmons Shelia Lamont-Stacey Veronica Kastelan 26 WORDS OF THANKS FROM THE FAMILIES OF THE NNU Staff Profile Sophie Evans I started in the Neonatal Unit at the Royal Children’s’ Hospital in 2009 as a new graduate. I completed 9 months on the unit as my first half of the graduate program. My second rotation was in the Children’s Neuroscience Centre, where I was able to consolidate the skills I had learnt and further increase my knowledge base. NNU Recipe Corner Janet Guerin is one of the nurses in the NNU. Janet spends a lot of her time outside of work baking and cooking. Whenever Janet is working in the NNU, there is great excitement as doctors and nurses rush to the NNU Tearoom to see what delights Janet has been baking. Janet bakes an extensive range of goodies and one of her favourites is featured here – ‘Double Chocolate Pecan Brownies’ from Belinda Jeffries ‘Mix & Bake’. Makes 12-14 Brownies Ingredients 90g roasted pecans ¼ cup (35g) plain flour ¼ tsp baking powder ¼ tsp salt 225g dark chocolate (cut into small chunks) 2/3 cup (150g) caster sugar 180g unsalted butter (room temp) 2 x 60g eggs 3 tsp vanilla extract 120g milk chocolate (cut into small chunks) Icing sugar for dusting Method 1. Preheat your oven to 160C. butter a 22cm square cake tin. Line it with a sheet of buttered foil, then line the base with buttered baking paper. Set aside. 2. Pulse the pecans in a food processor to chop them coarsely. Tip them into a bowl and toss them with a couple of teaspoons of the flour. Set aside. 3. Whiz the remaining flour, baking powder and salt in the processor until they’re just combined, then tip them into another bowl. Add the dark chocolate and sugar to the processer and whiz them together until the chocolate mixture is very finely chopped. Add the butter, eggs and vanilla extract to Having always had an interest in neonatal nursing, I was extremely keen to return to the Neonatal Unit. The neonatal team are incredibly supportive, with every member of staff contributing. The teamwork is excellent and I find every day in this specialty both challenging and very rewarding. I really enjoy the focus on family centred care and find the multi-disciplinary approach beneficial in providing the best possible care for our patients and their family. I have developed a good foundation of skills as a neonatal nurse working in the special care rooms for the last thirteen months and I am now transitioning into the intensive care rooms of the unit. So far, it has been a challenging and interesting experience and I look forward to further developing my skills as a NICU nurse and hope to complete the post grad course within the next few years. the chocolate mixture and whiz them together for 1 minute, stopping to scrape down the sides once or twice with a rubber spatula. Add the flour mixture and pulse it in only until everything just combines into a thick batter. Use a spatula to stir in the pecans and milk chocolate chunks. Smooth the batter into the prepared tin. 4. Bake for about 40 minutes or until a wooden toothpick inserted in the middle of the brownie comes out with moist, but not wet, crumbs on it. Cool the brownie in the tin on a wire rack. Once it’s cool, pop it in the fridge to chill. 5. When you’re ready to cut it, grasp the foil and ease the whole brownie out of the tin. Invert it onto a flat place and gently peel away the foil and paper, then invert it again onto a chopping board. 6. Slice the brownie into bars with a hot, dry knife. Just before serving the bars, dust with icing sugar to give them pretty snow tops. Layer the remaining bars between sheets of baking paper in an airtight container. Store them in the fridge for 10 days or so (or freeze them for up to 4 weeks). To all the wonderful staff, the “best of the best” of the NNU at RCH. There are too many names to mention but you know who you are… this includes the Ward Clerks, Nurses, Doctors, PSA’s, the whole team! Our experience as first time parents was not a pleasant one however we felt we were in the best hands. Thank you for your support & understanding… our last day with our baby girl was a beautiful one and one that made her departure special and comfortable… whenever you guys are having a bad day or feel frustrated by the challenges that will inevitably confront you, please remember us and know that you are respected and love for what you do. Many thanks and best wishes to you all. - Georgie & Matt Thank you so much for everything that you did to give Ryder the “best” chance at life. You are all truly amazing… what a fantastic job you do! With love, - Gemma & Rick Thank you for looking after Blake back in December 2010. We appreciate it SO MUCH! He is doing really well, thank you again. - Ethan & Sarah To the incredible team of the NNU at RCH, we will never forget your dedication and compassion that gave our Hugo a chance to thrive…we may be running as Hugo’s Hero’s in this year’s Run for the Kids, but to us, YOU are the real heroes. - Liz, Matt, Lana & Hugo xxxx “The happiest people don’t necessarily have the best of everything; they just make the best of everything they have”. Anon