From heartbreak to hope

Erin and Malu (Louisa Jones) 229564_11

By Luke Voogt

With a beaming smile and tons of energy, Belmont two-year-old Malu Hunt is a fitting choice for the face of this year’s Good Friday Appeal

“We feel quite honoured to be chosen out of all of the thousands of families that attend the hospital,” his mum Erin Johnson said.

“We’re really happy to be able to share his story and raise awareness.”

Watching Malu chase older brothers Harlan and Jarvie around the backyard, few would guess he is adapting to life with only half a functioning brain.

Malu underwent a rare and extremely complex surgery in July 2020 to completely disconnect one half of his brain while leaving it inside his head.

The hemispherotomy, a surgery The Royal Children’s Hospital performs less than six times a year, was the last resort to save him from debilitating seizures.

The seizures were relatively minor when they began, but they worsened rapidly, resulting in Malu blacking out and eventually losing his new-found ability to speak.

“It was pretty heartbreaking as they [seizures] progressed further and started getting longer,” Erin said.

“It was a really tough time for our family.”

Originating in the right hemisphere of Malu’s brain, the seizures also threatened to damage the “good” side of his brain ,Erin explained.

With little success through various medications, The Royal Children’s Hospital’s neurology team offered a final solution – a hemispherotomy.

The team’s expertise helped Erin and dad Morgan Hunt make the difficult decision to have their one-year-old undergo invasive brain surgery for the best chance of a normal life.

“They knew what they were talking about, and were able to answer our questions and offer advice on so many different things,” Erin said.

“There wasn’t a moment that we weren’t going to have the surgery.”

Erin and Morgan took turns at Malu’s bedside as he recovered, with COVID-19 restrictions then allowing only one parent to visit at a time.

The right hemisphere of the brain controls the left side of the body, meaning Malu had to “rewire” his remaining functioning hemisphere, Erin explained.

“Initially, there was no movement at all,” she said.

“He was back walking about six weeks after surgery but he doesn’t have much use of his left arm yet,” Erin said.

The operation also affected his eyesight, meaning his parents had to protect him from hitting objects with him “zooming all over the place”.

“There’s no slowing him down,” Erin said.

“He’s really come out of his shell since his surgery, which has been lovely.

“By the time he’s older he’ll have it mastered pretty well, hopefully.

“That’s why we wanted to do the surgery as early as possible; so he had the best chance of his brain rewiring.”

While Malu might not develop as high an IQ as he potentially could have with a full, healthy brain, his progress since the surgery has amazed his parents.

“His brain is rewiring itself,” Erin said.

“He’s got about 30 words so we’re quite happy with how he’s progressing. I think his brain was focused on getting the physical side of things going first.

“It blows my mind every day just to see the things that he’s doing. Most people would have no idea that he’s only functioning on one side of his brain.”

The Royal Children’s Hospital Good Friday Appeal helps thousands of children like Malu each year. To donate or for information www.goodfridayappeal.com.au