Harriet Elizabeth Johnston, 10, undergoes two major brain surgeries – with no relief

10-year-old Harriet Elizabeth Johnston has been in hospital for two months and had two major brain surgeries – but doctors still don’t know what’s wrong with her.

Harriet Elizabeth Johnston has spent the last two months in the Women’s and Children’s Hospital. Picture: Supplied by family

Harriet Elizabeth Johnston has had two major brain surgeries while in hospital for the past two months – but doctors still do not know what is wrong with the 10-year-old.

Her parents, mum Rhiannon Blue and stepdad Paul Gravestocks, say doctors are going above and beyond to do everything they can but that they live in fear as she suffers immeasurable pain

“The hardest part for us has been the unknown,” Mr Gravestocks, 44, said.

“We’re seven weeks down the track and we’re still completely in the unknown.”

The parents say despite not having any definitive answers to their child’s pain, the Women’s and Children’s hospital has been exceptional.

Harriet has already gone through a lifetime of tough journeys having spent the first eight and a half weeks of her life at the neonatal unit at Flinders Medical Centre after she was seven weeks born prematurely.

Soon after her birth she was diagnosed with a genetic condition called achondroplasia – the most common form of dwarfism.

Harriet Elizabeth Johnston, 10, has undergone brain surgery after waking up screaming in pain two months ago. Picture: Supplied by family

She has undergone two brain surgeries but is still suffering with pain. Picture: Supplied by family

When Harriet was 18 months old she was also diagnosed with hydrocephalus, a rare condition that causes a build up of fluid within the brain.

“The extra fluid puts pressure on the brain and can cause brain damage,” Ms Blue, who suffers multiple sclerosis and type one diabetes, said.

“Harriet underwent brain surgery to have a VP shunt fitted which drains the excess fluid.”

But seven weeks ago, eight years after the shunt was fitted, the young girl woke up in bed with excruciating pain.

“She said ‘my head, my head, it’s really hurting, I can’t sleep, I can’t lay down, I can’t get up, I feel really sick’,” Ms Blue, 41, said.

Harriet Elizabeth Johnston was born at 30 weeks and spent over eight weeks in the neonatal unit. Picture: Supplied by family

Ms Blue and Mr Gravestocks rushed Harriet to the Women’s and Children’s Hospital where she remains.

She suffered eight absent seizures, some lasting 45 minutes, which left her unresponsive.

“She basically just wasn’t there … she’s just staring, just completely not there at all,” Mr Gravestocks said.

A decision was made for Harriet to undergo major surgery to remove the base of her skull – a surgery that stopped the seizures but didn’t help Harriet’s pain.

“She was still at the same pain after surgery which we were pinning our hopes on being the fix for everything,” Mr Gravestocks said.

Harriet underwent another surgery to change the settings of the stunt she had implanted in her brain when she was a year and a half.

So far the surgeries have not been able to take away Harriet’s pain.

“It has been extremely difficult for us to be by Harriet’s side and watch her in so much pain, we just wish we could take her pain away,” Ms Blue said.

While Harriet continues to stay in the Women’s and Children’s Hospital her parents take turns staying by her side and at Ronald McDonald House.

Mr Gravestocks and Ms Blue said their family and friends have been extremely supportive, including Mr Gravestocks employer.

Ms Blue’s sister Elouise Stalenberg told The Advertiser it has an enormous toll on the family.

“The pressure of Harriet being so unwell is unimaginable but the financial strain of having no income while they stay by Harriet’s side only adds to more stress and pressure,” she said.

“I created a GoFundMe page because I know that despite the fact Paul and Rhiannon would never ask for help, they are also the first people who would always help anyone else in a heartbeat.”

If you’d like to support the family you can here.