Unusual sign newborn was gravely ill

A mother-of-three has revealed the unusual sign that her youngest child was suffering from a deadly illness.

A mother-of-three has revealed the unusual sign that her youngest child was suffering from a deadly illness.

Emma and her husband Adam started to worry about their newborn Harry when he was just a month old.

“We could see his head size was increasing and it looked like he was struggling to focus with his eyes at times,” she said, calling his head growth very sudden and obvious.

Emma took Harry to the local GP, who quickly called their closest hospital and sent the family there. The GP called the hospital to let them know Harry would be arriving their shortly.

“The hospital were ready when we got there to see Harry. Harry has two older brothers and New South Wales had gone into lockdown four days previously, so we had that to deal with as well,” she said.

Thankfully, Emma’s in-laws lived nearby and were able to take her other two children. But, she would leave that day and not return home for five more months. It was a month before she saw her other two children.

Harry's parents noticed his head growth when he was a month old. Picture: Supplied.

“Everything escalated very quickly,” she recalled.

Emma said Harry was taken straight for a CT once they got to Bega Hospital. Within an hour, it was discovered Harry had a brain tumour. A helicopter would take Emma and Harry to a hospital in Sydney.

“Harry was so unwell that they had a big team on the helicopter with him, but the NSW restrictions meant my husband couldn’t come with us,” she said.

The decision was made to intubate Harry and put him on life support due to how unwell he was. He was immediately placed in intensive care at a hospital in Sydney. A neurosurgeon had been briefed, and a decision was made to have Harry in surgery first thing in the morning.

“I think I just, I had every emotion. I was absolutely terrified. When you’re hearing the words ‘survives the night’. You’re hearing a lot of conversations and you realised just how serious this was,” she said.

Emma, Adam and their three children. Picture: Supplied.

“And the fact I wasn’t at home. I was in Sydney on my own without my husband and other boys. It was a lot.”

The aim of the first surgery was to perform a biopsy and remove as much as possible. However, the surgery had to be abandoned halfway through due to how fragile Harry was. A surgery performed the following day, doctors were able to get a large portion of the tumour.

Harry had a long, tough recovery. He had external drains controlling his brain fluid for a month, making it difficult for mum to pick him up and hold him.

Close to two months after that surgery, Harry was strong enough to start chemotherapy. He had 72 weeks of the treatment. About half way through, he was having regular MRIs and every one was showing a positive result. It allowed doctors to go in for a third surgery and remove the remainder of the tumour.

“It was a success. They were able to get what they had planned for. He must have had about a month recovering from that, and finished the remainder of his chemo,” Emma said.

“He’s been having routine MRIs which have all been positive since and show no reoccurence.”

He had a brain tumour. Picture: Supplied.

Emma said it was a “relief” every time, saying she had “scanxiety” every time one of Harry’s scans were approaching.

Harry is now doing great. The three-and-a-half year old is weeks away from starting preschool, something Emma describes as “amazing”.

“I think when we think back we thought it was a day we’d never get to experience, so the fact it’s here and he’s able to is incredible,” she said.

As a result of Harry’s brain tumour, he now has been diagnosed with cerebral palsy. It’s not an unexpected side effect of the original diagnosis.

His cerebral palsy means he has left-sided weakness. Initial conversations indicated Harry would struggle to walk and talk. But, he can talk and walk independently, wearing an ankle brace. He doesn’t use his left arm or hand “like everyone else would”. The family calls it his “helping hand”.

Harry does speech therapy, physiotherapy and occupational therapy to help.

“He keeps us on our toes. He learned to walk. He has two speeds — 110 per cent, full on, go, go, go or asleep,” Emma joked.

Emma is sharing her family’s story in support of the Starlight Foundation, calling the organisation “incredible”.

Now, they're sharing their story on behalf of Starlight. Picture: Supplied.

“Hospitals can be a scary and unsettling environment for children and family,” she said.

“For us, Starlight was a safe space that provided company for Harry and for us as well.”

She recalled a time where Harry was waking up after an MRI that require a general anaesthetic, and was inconsolable. Nothing Emma did was easing his pain or calming him down — a helpless feeling no parent likes to feel. But, a Starlight Captain came in.

“They were so patient and so gentle with him. It must have taken a good 15 minutes. He went from being inconsolable to laughing, smiling and singing,” she said.

“The stress that took away from me. When your child is distressed and nothing you can do to help, it’s a really helpless feeling. But I will always remember that day.”

Harry’s family are sharing their story in support of the Starlight Foundation’s Super Swim Challenge. Super Swim encourages Aussies to swim during the month of February and raise $5 million dollars to bring joy to sick kids in hospital. you can donate or register to take part in the challenge here