2015 ANNUAL REVIEW Over the past 20 years, The Children’s Hospital at Westmead has changed many thousands of lives. We have given a future to countless families. We have given them hope. With your continued support, we can give hope to many more families when they need it most. Thank you for being our partner in care. Front cover: Enzo, age 5 and Eloise, age 5 Back cover: Josephine, age 13 CONTENTS Chief Executive Message 2 2015 Highlights 4 Reflecting on 20 Years 6 Care in focus Neurology 10 Cardiology 18 Cancer 26 Liver Transplants 34 Supporters 2014-2015 41 How to help 52 2 Our 20th Anniversary is an important milestone, not just a reason to celebrate the past two decades of The Children’s Hospital at Westmead, but to imagine the possibilities for the years ahead. Back in 1995, it was wonderful to move into our new Hospital, full of promise of things to come, lives to save. But our Hospital has never just been about our buildings or equipment, our backbone is our people. Our staff and volunteers, the children and families in our care and our valued supporters in the community are at the true heart of what we do. Within this Annual Review, we have chosen four focus areas – neurology, cardiology, cancer and liver transplants – to demonstrate the work of our Hospital, how far we have come since 1995 and our vision for the future. Please know that the impact of your ongoing support is felt throughout the Hospital – in the corridors, in the operating theatres, by the bedsides and behind the scenes in research labs. As donors, you are such a special and integral part of our Hospital. As the years tick by we need your ongoing help and support to ensure our facilities remain at a world-class standard. It is my hope you will share our vision and enthusiasm for the future. We can continue to evolve paediatric health care and use research to unlock some of the greatest medical challenges of our generation. Many more young lives can be saved if we continue to work together. Thank you for your support, your time and your kindness. I wholeheartedly assure you that together we are making a very real and positive difference to sick children and their families.. Dr Michael Brydon Acting Chief Executive Sydney Children’s Hospitals Network 2015 HIGHLIGHTS Transplants Bear Cottage This year a number of milestones We launched the ‘Footprints in the were reached within our liver and Sand’ program at our dedicated kidney transplant programs. A record children’s hospice, Bear Cottage, number of life-saving liver transplants at Manly. With a record number were performed and we reached of bereaved families to care for, a total of 300 liver transplants Bear Cottage launched the program and 150 kidney transplants. to provide ongoing support to families whose child has passed away. Surgeons also transplanted a liver into a tiny six-week old baby, Australia’s This was in response to the needs of youngest ever transplant recipient. families and the strong connection they feel to Bear Cottage, even after the death of their child. World First Hospital in the Home In a world first, doctors and In an Australian first, The Children’s researchers at The Children’s Hospital Hospital at Westmead adapted the at Westmead are hoping to find a way ‘Hospital in the Home’ model of to delay or prevent the onset of juvenile care to provide home care for a diabetes by infusing patients with their two-year old boy on the waiting list own umbilical cord blood. for a heart transplant. It is hoped that the cord blood will This allowed clinicians to provide help ‘reboot’ the immune system to care in the comfort of the child’s prevent diabetes, which occurs when home to avoid spending over the body attacks and kills its own 100 days in hospital. insulin-producing cells. 4 Celebration Bell 3D Printing A celebration bell was recently installed The Centre for Children’s Bone in the Oncology Clinic as a symbol of and Musculoskeletal Health hope to mark the end of treatment for was established, including a young cancer patients. 3D Orthopaedics Laboratory for engineering and prototyping bone The beautiful ship’s bell is designed to implants for children using acknowledge and celebrate the journey 3D printing technology. of cancer patients and their families and was installed after a suggestion from This innovative treatment parents of children who had already approach is expected to dramatically been through cancer treatment. improve outcomes for children with orthopaedic conditions. Graduation Equipment The Children’s Hospital at Westmead’s Outcomes for patients have been Diploma of Child Health Program dramatically improved thanks to recently celebrated the graduation of the purchase of a range of medical the first cohort of doctors and nurses equipment with donated funds. from their International Postgraduate Paediatric Certificate in Zimbabwe. Some of the key items donated this year are a $2 million CT scanner, a The program has been running for ventilator and for the Grace Centre 23 years, educating doctors and nurses for Newborn Care, an additional bed in remote and developing countries. for the Paediatric Intensive Care Unit, temporary pacemakers for cardiac patients and monitors for babies at risk of SIDS disease. Reflecting on 20 Years Friday 6 November 2015 marks 20 years since The Children’s Hospital at Westmead opened its doors to begin a new era of paediatric health care in Sydney’s west. In the past 20 years we have touched the lives of many children and families from NSW and beyond. We had treated 530,000 inpatients, almost one million emergency cases and have performed 280,000 operations on babies and children. Our 20th Anniversary is an important milestone, not just to celebrate the past 20 years, but also to look forward to the next 20 years, continuing to push the boundaries of child health and improve and save the lives of many more children when they need us most. Annalise, age 6 6 1995 2008 First described Official opening of the case of a patient’s blood ‘New Children’s Hospital’ type changing to match that of her organ donor 1997 1995 -1995 NOW 1995 -1995 NOW 2009 Opening of the Book Bunker Opening of the Butterfly Wing for patients with eating 1998 disorders and their families Established the first Tumour Bank in the 2009 Southern Hemisphere Opening of the Kids Research Institute 1999 2011 Clown Doctor Rounds started Announced as a Nationally-Funded Centre for Hypoplastic Left Heart Syndrome 2000 Not so ‘new’ anymore, the Hospital is 2012 renamed ‘The Children’s First labyrinth in an Hospital at Westmead’ Australian hospital 2001 2013 First cancer gene Opening of Bear Cottage therapy trial for aggressive brain tumours 2004 2014 Special visit Opening of Hall Ward, to Bear Cottage by the dedicated paediatric the Duke and Duchess mental health ward of Cambridge 2006 2015 Opening of the Opening of updated George Gregan Playground Cardiac Catheter Suite Moving to Westmead was the realisation of the Hospital’s vision of creating a ‘total-healing environment’ Collin, age 6 8 Bella, age 6 EEG Monitoring 10 Care in focus Neurology Neurological disorders affect the brain, spinal cord and nerves and can have a significant impact on the quality of life of children and their families. Neurological disorders can be caused by a range of different problems such as genetic disease, infection or trauma. Some neurological conditions are life threatening, severely affect a child’s quality of life and can cause a life-long disability. At The Children’s Hospital at Westmead, the Neurology and Neurosurgery team is skilled in the use of innovative techniques and technology to investigate and treat neurological disorders. The team has pioneered some of these techniques in children in Australia. Surgeons are accomplished in the intricacies of paediatric brain and spinal surgery and rare disorders are diagnosed and treated in conjunction with Genetics Specialists. Diagnosing brain disorders requires the very best equipment and technology, with major funding from community donations. The Epilepsy Monitoring Unit was established in 2011 thanks to donations and has doubled the Hospital’s capacity to provide life-changing surgery to children with epilepsy. This has been a significant boost as 14,000 children in NSW have epilepsy and, for almost 30%, medication poorly controls their disease. THE BRAIN The human brain contains billions of nerve cells that send and receive information around the body. “ The Children’s Hospital at Westmead has given Eliza a second chance at life. She can now look to her future with hope instead of fea r. “ 12 Eliza Watching Eliza paint, her bright eyes concentrating on the colourful detail and a playful smile crossing her face, it’s difficult to imagine her suffering debilitating seizures every few hours. But this was the heartbreaking reality for Eliza and her family when she was diagnosed with severe epilepsy at just five years old. “We felt so scared, anxious and helpless. The fear of the unknown was, at times, overwhelming,” Eliza’s Mum, Julia, said. Doctors at The Children’s Hospital at Westmead knew of a revolutionary new surgery that had never been done on a child before in Australia and decided Eliza was the perfect candidate. It wasn’t a risk-free operation though, with doctors warning Eliza’s family that the risks included stroke and loss of vision. The surgery, called Stereo Electro Encephalography (SEEG), involved drilling small holes into Eliza’s skull and inserting metal rods into her brain to allow surgeons to precisely locate where the seizures originated.