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Casper thriving thanks to RCH

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Casper thriving thanks to RCH

Not long after birth, my little boy, Casper, was diagnosed with a condition called achondroplasia, a form of short-limbed dwarfism. I immediately got in touch with the skeletal dysplasia team at Murdoch Children’s Research Institute (MCRI), and not long after getting in touch Casper joined the clinical trial they’re running; testing the efficacy of vosoritide in children with achondroplasia.

Thus began our journey of frequent visits with the team at The Royal Children’s Hospital and MCRI, which has left me constantly amazed by the incredible work of the doctors and nurses. Casper went into respiratory distress after birth and was in the NICU, and due to his condition he’s at an increased risk of other health issues, such as ear infections, sleep apnea etc.

Because of this, he has frequent appointments at the RCH and at other allied health clinics to ensure he’s tracking along the way he should be. Casper is now almost 18 months and is happy, healthy, and thriving, thanks to the amazing care and support from the team at the RCH.

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Heart surgery at four days old

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Heart surgery at four days old

Ronin was born with Transposition of the Great Arteries and also diagnosed with foetal closure of the ductus arteriosus. Born at 35 weeks gestation after an emergency caesarean, the team from The Royal Children’s Hospital were there for his birth at the Royal Women’s Hospital. He was placed on ECMO within the hour and had his life saving heart surgery at 4 days old. There were ups and downs through his time in the Rosella ward and Koala ward. Without this amazing hospital and it’s very valuable and amazing team our son may not be thriving like he is today! Thank you to all!

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Isabella walks again thanks to RCH

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Isabella walks again thanks to RCH

Isabella started walking at 9 months old, she was unstoppable! At 11 months old she suddenly stopped walking and wasn’t herself. After X-rays and ultrasounds on her hips she was thought to have viral myositis. A week later Isabella started suffering from severe pain episodes. We drove her straight up to The Royal Children’s Hospital Emergency Department, and we are so glad we did.

Clinically Isabella was ok, she looked healthy, had no fever and all her bloods came back ok. It was at this point the doctors listened to me when I said I knew something wasn’t right, and they watched the videos of her pain episodes. They did an MRI on her back and she was diagnosed with lumber discitis and spinal osteomyelitis of L3-L4. Isabella was on the sugar glider ward and absolutely everyone we dealt with went above and beyond and were amazing. Words that resonated with me that a doctor said were; ‘we treat these children as if they were our own’.

And as the days passed, we witnessed this. Isabella had IV antibiotics and a CVC line put in so that she could continue her treatment at home. Yesterday, Isabella started walking again.

We will never forget the treatment we received at this hospital. Not only are the doctors remarkable knowledgeable, but they are empathetic, they listen and like they told us, they really do treat these kids as if they are their own. Forever grateful. A bit shout out to Tommy a nurse on the sugar glider ward who Bella just loved and who was so good to us xxx

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William has a narrowing of his airways

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William has a narrowing of his airways

Our gorgeous William is an outpatient at the RCH. He has a narrowing of his airways (subglottic stenosis) which causes him to get severe croup when he’s ill. The amazing doctors and nurses at The Royal Children’s Hospital give him the best care possible and we couldn’t be anymore grateful for all their help over the past 3 years… they’re amazing.

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RCH becomes second home for Ezekiel

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RCH becomes second home for Ezekiel

Ezekiel was born by emergency cesarean at 35 weeks gestation following placental abruption causing fetal distress. Up until 2 days prior to birth I was told Ezekiel was perfectly healthy. I had a scan in hospital due to reduced movement where it was discovered Ezekiel had moderately enlarged ventricles in his brain (Ventriculomegaly).

Because I was already in premature labour we had no time for transfer to Melbourne for tertiary scans. So it wasn’t until Ezekiel was born and in the special care unit that it became clear just how complex his needs were and he was referred immediately to RCH for ongoing specialist care. Ezekiel has been diagnosed with a rare craniofacial condition called Goldenhar Syndrome. He was born with 2 holes in his heart, spinal abnormalities, multiple brain malformations, unilateral conductive hearing loss as his left ear did not develop, he has dermoid cysts in both eyes and Duane’s syndrome in his left eye limiting his ability to move it past the midline and the list goes on.

Ezekiel is now 14 months old and under the care of many different specialist teams at RCH including Cardiology, Audiology, Ophthalmology, Neurosurgery, Maxilofacial, Craniofacial, Genetics, ENT, Gastroenterology. He required neurosurgery in December to place a Ventriculoperitoneal Shunt to treat his hydrocephalus relieving pressure from his brain and spinal cord. Ezekiel is also extremely small for his age both in height and weight despite adequate nutrition and he is undergoing further testing to find a possible genetic cause for his growth failure. He has been tube dependent for feeding since he was a newborn.

Needless to say RCH has become a second home for Ezekiel and I, there is no other place I would trust with my sons life and as difficult as our journey has been, I find great comfort in the expertise of this hospital, the nurses, Volunteers and doctors are more valuable than they’ll ever know.

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Kruz gets best care in the world

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Kruz gets best care in the world

Kruz has Spastic Quadriplegia Cerebral Palsy which results in many health challenges, hospital visits and operations. Kruz has just undergone bilateral hip reconstructive surgery and is staying in the Platypus Ward. The team of surgeons, doctors and nurses have been absolutely unbelievable!

We are so lucky that our little Superman and so many other super kiddos can get the access to the best care in the world at the RCH.

Thank you so much to everyone at the RCH!

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RCH staff are heroes

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RCH staff are heroes

Our daughter Ava was having breathing difficulties at 2 weeks of age, we took her into RCH & the nurses, doctors & specialists were so thorough, they found she had laryngomalacia & cysts in her nose that was stopping her from breathing. They operated on her to remove them which saved her.
A few days after being released we went back in as she got meningitis so we spent another week in hospital while they treated her. It’s was very stressful as she was only 2 weeks old but the care the hospital provided made us so reassured that she would be ok I honestly can never thank the nurses and doctors enough for their care, they are real life heroes!

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Dimitri had first heart surgery at 5 weeks

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Dimitri had first heart surgery at 5 weeks

Dimitri was born with a coronary heart disease (CHD), this was diagnosed after birth due to him having a significant heart murmur. Dimitri was diagnosed at 1 week of age with Severe Aortic Stenosis, a unicuspid aortic valve and a severe leak of his aortic valve. Our cardiologist told us if he had not been diagnosed we would of lost him before his first birthday. He underwent his first of possibly many open heart surgeries at just 5 weeks of age. The staff at RCH were absolutely amazing and so supportive. If it wasn’t for the nurses in both PICU Rosella and Koala I wouldn’t have been as strong as I was. Even though we were going through COVID the nurses were always there.

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Bonnie’s life saved by hospital multiple times

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Bonnie’s life saved by hospital multiple times

Bonnie is 7 years old and suffers chronic asthma, eosinophilic esophagitis, anaphylaxis and other allergies. She has been a patient at the RCH for a while now.
She sees a few specialists including gastroenterologist, endocrinologist, immunologist, respiratory doctor. We visit ED frequently, generally for asthma, needing emergency care.
Bonnie’s life has been saved multiple times by RCH and we are forever grateful. Thanks to all the staff, you guys are amazing!

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Arterial switch operation at 1 week old

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Arterial switch operation at 1 week old

Our baby Alfie was born with transposition of the great arteries, and had an arterial switch at 1 week old. He had several complications post surgery and spent 3 weeks in ICU, had 4 procedures, and spent a total of 6 weeks in total in the RCH.
The staff, nurses, and doctors were incredible, and made a very difficult time bearable.
Alfie is now doing very well and is home with his parents, and we’re incredibly grateful for the RCH.

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