RCH Foundation Newsletter - Issue 1, Summer 2016

HANDS UP FOR

Our Children STORIES FROM THE RCH ISSUE 1. SUMMER 2016

RCH FOUNDATION NEWSLETTER

MEET NIKITA, A FIGHTER, AN INSPIRATION Born prematurely by emergency caesarean, Nikita was a tiny 1780grams or half the size of most newborns.

Her early arrival was due to a rare birth defect called Long Gap Oesophageal Atresia, a condition whereby Nikita’s oesophagus and stomach were not connected. Both segments of her oesophagus ended in blind pouches with a very long gap in between.

Doctors identified Nikita’s condition during the 16 week pregnancy scan, so an RCH team were on standby ready to transport her immediately to the Butterfly ward, Newborn Intensive Care Unit (NICU). Nikita was in the “danger zone” and 24 hour care was essential to saving her life.

In the NICU, a life-saving replogle tube was inserted to suction saliva from her blocked oesophagus and prevent her from breathing it into her lungs.

Nikita was then given a ventilator to help her breathe more easily. Unable to feed orally, Nikita also required a gastronomy tube to deliver nutrition directly into her stomach.

For six months Nikita, mum Isabelle, dad Chris and her brother Jamie stayed at the RCH while doctors worked to get Nikita well. >> STORY CONTINUED ON PAGE 4

Contents Welcome 2 Meet Asha

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Learning to Crawl Cover story continued

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Nursing Development Supported by RCH Auxiliaries

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A Young Champion 6 The 2016 RCH Good Friday Appeal Did you know?

Leadership in medical imaging

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RCH people Meet Dr Jeremy Freeman

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Join the Conversation f RCHMelbourne t RCH_Foundation rch.foundation@rch.org.au 2 rchfoundation.org.au The Royal Children’s Hospital Foundation Level 2, 48 Flemington Road Parkville, VIC 3052 03 9345 5037 ABN 15 007 143 142 ACN 007 143 142

Welcome Welcome to the first edition of Hands up for Our Children, a quarterly newsletter made just for you — our donor community.

Inside you will find inspiring stories about patients Nikita, Asha and Simone whose lives have been transformed thanks to the great care provided by The Royal Children’s Hospital (RCH). When you give to the hospital, you are supporting courageous children and their families.

I want to thank you — our supporters — who allow us to help make the hospital into the great children’s hospital that we all want it to be. I would particularly like to thank Strathmore Community Bank® Branch, Bendigo Bank who have kindly supported the printing of this newsletter. In this edition, you’ll also read about some of the people in our community who work hard to raise funds.

The RCH sees more than 200,000 outpatients each year; treated 84,400 cases in emergency last year alone and admitted 850 children like Nikita to its Newborn Intensive Care Unit known as Butterfly ward.

We are always humbled by the support we receive from around the State. The hospital relies on the funds given by our generous donors to achieve its ambitions of leadership, excellence and great care. We cannot do it without you.

I hope you enjoy the newsletter and if you have a story you would like to share, please email or write to us. (details to the left)

If this newsletter has arrived at a difficult time for you, please know we have you in our thoughts.

We acknowledge loved ones who have passed away in recent times and remember their family and friends who miss them every day.

The future of children’s health is in our hands and together we can make an impact. Thank you so much.

Warm regards,

Sue Hunt Chief Executive Officer

Leaving a legacy?

Is The Royal Children’s Hospital Foundation in your Will? Please let us know even if you prefer to make an anonymous gift. Call the office today on 03 9345 5037 and we’ll make sure your gift will be used exactly as you intend.

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Meet Asha Dannielle and Robert Ferry knew their baby was seriously unwell at 24 weeks into the pregnancy - Asha Ferry has defied the odds.

At birth, doctors diagnosed baby Asha with an extremely rare condition — Megacystis-Microcolon Intestinal Hypoperistalsis Syndrome. This condition causes severe weakness in the gastrointestinal and renal tracts and significantly compromises the digestive system.

Asha’s future was uncertain but determined to fight, Dannielle and Robert brought her to the RCH for a second opinion, and a second chance.

“I always thought the RCH was amazing, but then I went there and realised amazing doesn’t cover it. The staff have made such a wonderful contribution to Asha’s and our lives,” says Dannielle.

Asha’s condition is so rare that RCH doctors treat only one child affected every five years.

Though Asha continued to grow and thrive thanks to her treatment under RCH care, there were a number of touch-and-go times. At one point Asha underwent six surgeries in six weeks, some of which were emergency operations to save her life.

“Asha’s medical team were amazing and so supportive of what we were going through. Not only was Asha’s care exemplary, staff also made sure

Strathmore Community Bank ® Branch

that Rob and I were looking after ourselves.”

Asha is now home with her family and “growing beautifully” with interim care from the RCH @ Home team. Asha’s doctors are working hard to plan her next major operation. Connecting her gut and bowel will mean she can digest food normally and live a long, happy life.

“We have a long journey ahead of us, but it’s filled with tremendous hope and that opportunity has been given to us by the RCH team. It takes very special people to turn what is every parents’ worst nightmare into an amazing journey that has enriched our lives and hearts.”

The equipment used to save Asha’s life was funded through donations.

To help other kids like Asha, donate today.

Images: Asha with Mum, Dannielle and Dad, Robert at the RCH.

The printing of this newsletter is proudly supported

by Strathmore Community Bank® Branch, Bendigo Bank.

337 Napier Street, Strathmore VIC 3041 strathmore3041.com.au | bendigobank.com.au/strathmore Open: Monday to Friday 9am - 5pm

Saturday 9am - 12 noon.

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Learning to crawl >> COVER STORY CONTINUED

The first step was a modified ‘fokers’ procedure, where sutures (special medical stitches) in the upper and lower parts of her oesophagus were gently and slowly pulled together to lessen the gap. The procedure was repeated again at three months of age and in both instances Nikita was incubated for over a week.

“It was one of the scariest moments of our lives,” says mum Isabelle.

“Nikita stopped breathing on one occasion and her lung collapsed. It was at this point we realised how vulnerable our baby girl was.”

Successfully reducing the gap, doctors then attempted to join her oesophagus together. The high-risk six-hour operation changed Nikita’s life.

“That was the longest six-hours of our lives. When the surgeon came into the waiting room after the operation, he sat down next to us and then looked up with a huge smile — it was priceless and a moment in time we’ll never forget,” said mum, Isabelle, who herself glows with a big smile when recalling the memory.

Although Nikita receives all her nutrition via her gastrostomy tube, she is now happily eating solids orally which is a huge accomplishment.

This feisty little girl is also reaching important milestones like learning to crawl and getting her first baby teeth.

Nikita’s family feel blessed to have received overwhelming support and love from their family and friends, but above all, are grateful for the outstanding care they have received at the RCH. “There are no words to express how truly grateful we are to the entire Butterfly ward, particularly the nurses also known as Nikita’s surrogate ‘aunties’. We have been given the most incredible gift…a healthy baby girl, who after a six month stay in hospital, is finally home with us.”

Nikita loves tickles (especially from dad)

Thank you Nikita’s smile shows her first baby teeth

After everything Nikita has been through she is certainly living up to the meaning of her name ‘unconquerable’.

Proud big brother Jamie meets his tiny baby sister for the first time.

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Nursing Development SUPPORTED BY RCH AUXILIARIES

Nurses are the backbone of great healthcare.

The RCH Auxiliaries have long admired the outstanding work of the nurses and so in 2009 established the Dame Elisabeth Murdoch Nursing Development Scholarship to further support nursing at the hospital.

This annual scholarship funds the advancement of industry talent and healthcare best practices, and is awarded to an exemplary member of the nursing team. The scholarship enables the recipient to travel overseas to further study, develop an education program for the hospital and present their work internationally.

The most recent recipient is Catherine Fox, a 15 year veteran of neonatal intensive care, and the first neonatal nurse practitioner in Australia dedicated to emergency infant retrievals.

A member of the RCH Paediatric Infant Perinatal Emergency Retrieval (PIPER) service, Catherine travels across Victoria transferring babies to hospitals for specialised care.

Catherine has undertaken 200 emergency infant retrievals with the service ensuring the sickest and most

‘There isn’t anywhere we won’t go to give the babies of Victoria the very best care’

vulnerable babies get the critical care they need in the most fragile of circumstances.

in Swan Hill, or in the back of an ambulance on the way to Ballarat,” said Catherine.

Catherine said that working in emergency infant retrievals, means that she could be anywhere in Victoria at any time.

The ambulance is Catherine’s mobile intensive care unit and for each retrieval she assesses the child, prescribes any required medication and creates a plan of care. Catherine must anticipate any number of scenarios to ensure the baby makes it safely to hospital.

“A normal day might find me being woken up at 5am by a ringing phone because there is a sick baby somewhere in the State that needs our help. Otherwise, you might find me on a cold and rainy tarmac

It’s exceptional nurses like Catherine who help make the RCH great.

Buy your tickets today and support the advancement of RCH nursing.

DAME ELISABETH MURDOCH

Luncheon

NURSING DEVELOPMENT SCHOLARSHIP

Friday 3 June 2016 $125 per person Book online now DEML2016.eventbrite.com.au For general enquiries call 03 9345 5188 5

A Young Champion THE 2016 RCH GOOD FRIDAY APPEAL Simone Lionetti, a bright and brave little girl, is battling a chronic degenerative muscular disorder yet despite her hardships she’s living life to the fullest and surpassing expectations thanks to RCH care.

When Simone was born her arrival was “much awaited and longed for” by parents Ella and Mario.

An alert baby, Simone reached many of her milestones and began talking from just eight months of age. However, by ten months Simone could not easily roll, she hadn’t yet begun to crawl and some physical skills — like grasping cutlery — seemed to regress. Certain this was more than Simone developing at her own pace, the Lionetti’s went looking for answers.

They consulted with their GP and paediatrician before being referred to the RCH. It was at the hospital that they met neurologist A/Prof Monique Ryan. “A blood test and a long week of waiting” preceded the diagnosis of spinal muscular atrophy (SMA), a chronic progressive muscular disorder which results in severe muscle weakness. Initially, it was feared that Simone had Type 1 SMA, the most severe form, with babies affected rarely reaching their second birthday.

“We had never heard of this disease let alone understood anything about it,” says Ella. “We were devastated by the diagnosis and the weeks and months following it I would not wish on anybody. However, this was the start of our close association with the RCH and, through the wonderful staff, we were given as much support, time to grieve and guidance as we needed.”

Simone responded well to treatment and eventually reached a significant milestone: balancing herself and staying in a sitting position without 6

falling for more than 25 seconds.

This breakthrough changed her prognosis to SMA Type 2, a less severe form with fewer serious implications and greater lifeexpectancy.

“Though the grey cloud of the early days has lifted, there are more issues to manage over time: contractures, scoliosis, bone density, fractures, respiratory issues, etc.,” says Ella.

“But, as each one of these things rears its ugly head, we’re introduced to new people at the RCH and it never ceases to amaze me how empathetic, kind and caring everyone is.”

To provide Simone with the best care possible, she attends an RCH Neuromuscular Clinic every three months. There she visits with specialists from the seven departments that manage her care: neurology, orthopaedics, orthotics and prosthetics, physiotherapy, occupational therapy, respiratory medicine and genetics.

Thanks to great RCH care and the unwavering support of her family, Simone is enjoying “unbelievable independence” and has grown into a vibrant six year old. Ella and Mario are grateful to the hospital for all the support and jumped at the chance for Simone to be involved in the RCH Good Friday Appeal. Simone agreed with great excitement!

Despite being in a wheelchair Simone, participates in track and field, does dance classes and walks herself to school. A go-getter, she plans to become a veterinarian when she grows up.

When asked what they want for Simone, Ella and Mario don’t hesitate in their answer.

“Our goal is to enable Simone to live a happy, normal life, filled with opportunity and to keep her as healthy as possible for when an SMA cure is developed.”

For more info on the 2016 Good Friday Appeal visit goodfridayappeal.com.au

Did you know? found applications well beyond the craniofacial surgery application,” Medical Photographer Robert Reitmaier said.

Although this practice is now widespread, the RCH remains at the cutting edge of the use of this technology. The hospital is now expanding the service to measure results for animation surgery for facial palsy, fat grafting and other techniques.

The RCH is using 3D photography to achieve better outcomes for children with craniofacial conditions while reducing the requirement for invasive and burdensome medical imaging.

The RCH Craniofacial Surgery Unit was one of the first in the world to regularly record their results with 3D photography.

the growth and outcomes of children with craniofacial conditions who undergo surgical and conservative treatment.

The RCH has the busiest paediatric craniofacial surgery unit in Australia, with a long-standing commitment to innovation and excellence. The hospital recognised that accurate measurement outcomes was the most important factor for obtaining excellent clinical results, and initiated the 3D photography program.

3D photography is a system in which multiple standard photographs are taken from different directions and a computer program is used to assemble those 2D images into a 3D accurate representation. The RCH has been at the forefront of 3D photography application to document

“The 3D Photography service is a sustainable and integral component of the RCH Clinical Photography department activities and has also

This is a wonderful example of philanthropy supporting great care and global leadership. The 3D Imaging Centre is supported by funds donated by The Muriel & Les Batten Foundation.

KEEP UP TO DATE WITH INFORMATION FROM THE RCH. JOIN THE CONVERSATION f RCHMelbourne t RCH_Foundation

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The Royal Children’s Hospital Foundation ACN 007 143 142 ABN 15 007 143 142

Please complete and mail this form to: The Royal Children’s Hospital Foundation, Level 2, 48 Flemington Road, Parkville, VIC 3052 You can also donate online at: rchfoundation.org.au/donate

If you choose to make a gift today please know how gratefully it will be received.

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MEET DR JEREMY FREEMAN, A LIFE SAVER Jeremy is an award winning neurologist, specialising in conditions of the brain, spine, muscles and nerves, as well as research and brain imaging.

“I really value working with expert colleagues who are dedicated to providing the highest standard of care for our patients, combined with compassion for their parents and siblings.”

Thank you for supporting lifesavers like Jeremy.

Donations mean we can train the very best minds to look after our children.

Did you know: Jeremy conquered the Kokoda Trek with fellow RCH fundraisers to raise $84,000 for the hospital

Your gift makes everything possible Thank you for taking the time to read our newsletter, we hope you feel proud of what you make possible through your continued support. If you have any feedback please email us at rch.foundation@rch.org.au or call 03 9345 5037.

If you have not supported the RCH Foundation before or you would like to make an additional gift at this time, we sincerely thank you. Fill in your details and then cut out that section and return it in the envelope provided.

On behalf of those who will benefit from your kindness and care, our heartfelt thanks.

“I treasure every moment I have with Carla. Thank you for supporting The Royal Children’s Hospital - it means a lot to me and my family.” Joanne, RCH patient mum.