Monty's Story

30 Nov 2020

When Monty was born, his parents, Jess and Danny were over the moon. He was their third child and was simply gorgeous. When he failed the newborn hearing test, the different staff and teams at Sydney Children’s Hospital, Randwick started investigating what might be causing this.

Monty’s parents soon also noticed that he wasn’t meeting other significant milestones for his age. Instead of the usual newborn characteristics shining through, Monty was very limp and tired – he was more like a rag doll. This reinforced Jess and Danny’s fear that something more serious was going on and his doctors worked to uncover what was happening.

Soon after, an MRI showed that little Monty had hydrocephalus, or fluid build-up in the skull, which was causing his brain to swell. He was referred to Sydney Children’s Hospital, Randwick where he had emergency brain surgery and a shunt placed to relieve pressure in his brain. He was in Hospital for a few weeks during the holiday period.

Still unsure what the cause of Monty’s condition was, the doctors worked together with Monty’s parents to understand why this was happening to help with further treatment and the best possible care plan. At just two years of age, Monty was diagnosed with Pontocerebellar Hypoplasia, a rare disease that affects the development of the brain.

“It was an incredibly hard time – there was so much uncertainty and we had a lot to learn about Monty’s condition. We were scared and at times felt helpless, but we had to just keep on moving forward one step at a time,” said Jess.

Monty and his family were under the care of a cross departmental team; including neurosurgery, neurology, Rehab2Kids, physiotherapy, occupational therapy, eye clinic, feeding clinic, audiology, orthopaedics, orthotics, and general paediatrics. Not surprisingly the Hospital became his second family as he spent a long time there.

When he was three, Monty’s situation took a turn for the worse, his condition becoming life threatening in a matter of minutes with headaches and vomiting. He was rushed to Hospital where doctors discovered he had a blockage in his shunt, which seemed to repeatedly clear itself. The doctors monitored it closely and when it continued to occur, they made the difficult decision to operate - which was not without its own risks. Unfortunately, post-surgery Monty suffered a setback, which saw him back in ICU.

“It was such a stressful period, but we knew he was in good hands, which helped us just get on with it,” said Jess.

During Monty’s stay in ICU something wonderful happened that still stays with Jess and Danny.

“As Monty recovered in ICU he was allowed bed leave to go down the hallway and back. He was struggling, but then he saw a beautiful painting of an echidna as part of the Art program exhibitions hanging on the wall. He smiled for the first time since his surgery. Every day while we were in ICU we would visit that painting, which would put a smile on all our faces. And now, we have that painting hanging on our wall at home,” said Jess.

After months in Hospital, Monty finally got to go home with his family, where he belongs. Fast forward a few years, and Monty is a bubbly 7-year-old who attends school with his brother and sister and loves hanging out with his friends.

He still visits the Hospital throughout the year for check-ups and when he walks down the hall, he’s greeted like a celebrity by all the staff who have come to know him over the years.

His mum said, “He is such a happy kid who wears his heart on his sleeve. He gives you his whole self and he is a beautiful part of our family. We want him to have the same opportunities as other kids and to be included in the community. We simply want him to live his best life.”

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