Well our story started in 2013 when we moved from Melbourne from Sydney after seeing Dr Francoise on TV after she had done a bone marrow transplant on a boy who had aplastic anaemia.
Our daughter Mapalo-Joy had sickle cell disease at the time. We bought a house in Melbourne and moved in November 2013. We were under the care of D. Anthea Greenway, now under Oncology team with Dr Dave Hughes.
The Royal Children Hospital became home to us as we would visit on very regular basis due to frequent sickle cell crises of our daughter. We have been admitted in different w...
Well our story started in 2013 when we moved from Melbourne from Sydney after seeing Dr Francoise on TV after she had done a bone marrow transplant on a boy who had aplastic anaemia.
Our daughter Mapalo-Joy had sickle cell disease at the time. We bought a house in Melbourne and moved in November 2013. We were under the care of D. Anthea Greenway, now under Oncology team with Dr Dave Hughes.
The Royal Children Hospital became home to us as we would visit on very regular basis due to frequent sickle cell crises of our daughter. We have been admitted in different wards and know a lot of clinicians who have remained friends and "part of our family". About two years ago, we started doing red-cell exchange every four weeks. With other appointments we would visit the hospital every 2 to 3 weeks to do blood test.
Mapalo was diagnosed with sickle cell disease at 14 months old in Perth Western Australia in 2009. We travelled from Perth to Sydney and finally Melbourne where our daughter has been managed up to this day.
On 21st February 2019, Mapalo-Joy had a very successful bone marrow transplant to cure the sickle cell disease. This was the first bone marrow transplant for the kind of sickle cell she has at The Royal Children's Hospital. This is huge for us and her disease prompted our family to start raising awareness about this disease as it is considered a rare disease in Australia. Please see our story here. https://aussicklecelladvocacy.org/about-us/our-story/ A huge thank you to the RCH staff for giving our baby a gift of life.
There are many things that make four-year-old’s happy, like paw patrol, bowling, and eating ice cream, yet visiting the hospital doesn’t usually rank high on that list. However, Noah isn’t your average four-year-old. “I love the hospital because they’re all my best friends,” grins four-year-old Noah, with the deepest sincerity only a toddler can behold. And it’s a pretty big statement for a boy who has spent his whole life in and out of The Royal Children’s Hospital (RCH).
Signs of Noah’s heart condition were picked up at mum Rhiannon’s 20 week antenatal scan...
There are many things that make four-year-old’s happy, like paw patrol, bowling, and eating ice cream, yet visiting the hospital doesn’t usually rank high on that list. However, Noah isn’t your average four-year-old. “I love the hospital because they’re all my best friends,” grins four-year-old Noah, with the deepest sincerity only a toddler can behold. And it’s a pretty big statement for a boy who has spent his whole life in and out of The Royal Children’s Hospital (RCH).
Signs of Noah’s heart condition were picked up at mum Rhiannon’s 20 week antenatal scan. “The doctor showed us the baby’s feet, the baby’s head, and then went quiet for a long time,” said Rhiannon. “Then he said, there’s a problem with your baby’s heart.”
After years of trying to get pregnant with their second child, Noah’s diagnosis of hypoplastic left heart syndrome was devastating.
The family quickly sprung to action. Hoping for the best but preparing for the worst, Rhiannon and Josh met with clinicians, spoke to other families, spent hours researching, and tried to mentally prepare themselves for what was set to be a high-stakes delivery.
“It was pretty full on,” Josh said with his voice breaking, reflecting on the arrival of their new born son. After Noah’s delivery, “we had a quick hold of Noah – maybe thirty seconds – and then we had to hand him over to the doctors to make sure he would survive.”
Experts at the RCH immediately got to work. Just minutes after little Noah’s arrival, cardiologists took the newborn baby straight into intensive care, where a breathing tube was inserted along with essential monitoring lines to keep his little body alive.
“Hypoplastic left heart is one of the more complex heart conditions we deal with, where the left side of the heart hasn’t formed properly,” said RCH paediatric cardiologist Dr Bryn Jones.
“Most of us a born with two sides, a left and a right side, and in Noah’s case the entire left side hadn’t formed. After delivery, Noah was quickly brought across to our Intensive Care Unit, and went for his first operation within a few days of life.”
For little Noah, this was just the start of a life-long journey at the RCH.
His first surgery at two days of age was followed by a three month stay between the Intensive Care Unit and the hospital’s dedicated Cardiac Ward, Koala, where specialists worked around the clock to monitor and care for his delicate little body.
Noah underwent his second surgery at just three months of age, providing the essential support his little heart needed to continue to beat on its own, and for the family this meant the additional blessing of being able to take their little boy home.
“Luckily for Noah, the expertise that the team has for dealing with patients like him is world class. Our team of surgeons, intensivists, nursing staff and cardiologists helped Noah and his family all the way through from before birth, and without that expertise he wouldn’t be where he is today,” said Bryn.
And for Noah, today he’s at home, next to his sister and best friend, watching cartoons, and recalling highlights from his fourth birthday bowling party. It’s hard to believe when meeting this cheeky, fun loving and energetic little boy that he underwent his latest major surgery just months ago.
This third surgery marks the final significant step in his treatment for hypoplastic left heart syndrome, a milestone that means Noah and his family can now focus on every day four-year-old tasks, like playing footy with his friends and getting ready to start school.
“You think you’d thank a bloke who can save your child’s life… but I don’t think you can. There’s nothing in the world you could give to thank them enough,” said Josh.
“You put every bit of trust in your medical professionals, your surgeons, cardiologists. And we have some of the best in the world looking after our kids here.”