Parents launch legal action over ‘awful decision’ to amputate four-year-old’s leg after alleged negligence

These twin brothers were born identical - but now one is two inches shorter and facing an unfathomable ultimatum due to a “horror” hospital ordeal.

Warning: Graphic images

How do you tell a four-year-old boy you’re “taking his leg away”?

That’s the “unbearable conversation” now facing Sunshine Coast parents Kristen and Jarrad Bayliss, whose son Evan was left with a severely deformed right leg as a result of what they allege was preventable medical negligence in the weeks after his birth, leading to a near-fatal infection.

Four years on from their experience at Brisbane’s Mater Hospital, the couple say they are wracked with guilt and need to choose — do they commit to “years of invasive and painful surgeries” for Evan, or take the other “awful option”?

Evan will likely need his leg amputated. Picture: Supplied

“Give him a below-the-knee amputation, and he has a prosthetic for the rest of his life,” said Mrs Bayliss, 43.

“It has to be done soon, before he starts school. That decision in itself is awful, to have to tell a four-year-old, ‘We’re taking your leg away.’ That’s a forever decision.”

Evan has already been through four years of constant hospital visits and physical therapy, and wears a permanent boot on his leg.

Mr Bayliss, 47, said despite his young age, Evan was already beginning to notice the difference with his “fit and strong” identical twin, Ethan.

“He asks, ‘Is my leg sick?’” he said.

“He’s two inches shorter than his brother. They both do swimming lessons — Ethan just progressed to the next stage and Evan can’t. He had a meltdown. The physical differences are starting to show, he’s starting to realise. They want to run around, he trips over a lot. He gets upset. From a psychological perspective we are constantly reminded of what’s happened.”

The newborn twins with their big sister Mara. Picture: Supplied

The parents last month filed a personal injury lawsuit against Mater Hospital and Children’s Health Queensland, alleging they suffered loss of income as a result of the two hospitals’ botched treatment of Evan.

Evan and Ethan were delivered at the Mater Hospital on December 1, 2020, significantly preterm at 29 weeks and five days, due to risk of complications from twin anaemia polycythemia sequence (TAPS), a rare and potentially fatal condition affecting twins that share a placenta which sees one receiving more red blood cells than the other.

Both boys were transferred to Mater’s Neonatal Intensive Care Unit (NICU).

While in the womb, doctors had diagnosed Evan with a bladder obstruction, which they believed was likely caused by posterior urethral valves (PUV), or folds of tissue blocking the passage.

Based on this working diagnosis, Evan was fitted with a temporary taped catheter in the NICU by surgical staff from nearby Queensland Children’s Hospital (QCH).

Kristen and Jarrad say they repeatedly raised concerns about Evan’s catheter. Picture: Supplied

At that point, the “aim of the game” was to get Evan to 2kg so he could be fitted with a traditional Foley catheter — which has a balloon on the end to keep it in place — and would be stable enough to undergo a procedure called a micturating cystourethrogram (MCUG), which would determine whether he did in fact have PUV.

“We didn’t think he needed the catheter — we were very keen to get this MCUG done so he could get it off,” said Mr Bayliss.

According to the parents, it was just before New Year when they began to grow concerned.

They claim the tapes around the catheter were “dirty with faeces” and urine appeared to be leaking into his nappy.

But when they raised concerns with nursing staff, they allege they were told they had been given “strict instructions” by the QCH surgical team “not to touch these tapes”.

Evan went into sepsis on January 5 and was deemed unlikely to survive. Picture: Supplied

“This went back and forth for the better part of a week, each day we were getting more aggressive [saying] this doesn’t look right, doesn’t seem hygienic,” Mrs Bayliss said.

“We were starting to get really nervous and quite angry and upset why no one was listening to us or talking to us … and each day we’d go back the tapes were dirty.”

On January 5, Evan went into urosepsis, a potentially lethal condition which occurs when an infection spreads from the urinary tract into the blood and vital organs.

He was rushed to the Paediatric Intensive Care Unit (PICU) at Queensland Children’s Hospital, where staff informed his parents that he was unlikely to survive.

“He was deemed ‘incompatible with life’,” Mrs Bayliss said. “His body was shutting down. His legs were turning black. You look at the photo — that’s a dead baby. We just sat next to him and said our goodbyes a number of times in the night.”

‘We just sat next to him and said our goodbyes.’ Picture: Supplied

Evan miraculously survived — but complications from intensive care would leave him with his lasting leg injury.

At the PICU, Evan was fitted with an intra-arterial line in his right femoral artery to monitor his blood pressure and take blood samples. He developed a blood clot in the artery, leading to necrosis and muscle loss in his calf.

“The lack of blood flow he had to his leg basically meant the tissue on his leg died and fell away,” Mrs Bayliss said.

“It also affected the growth plates. From his knee to his ankle and foot, the bones don’t grow properly. At the end of the day Evan wouldn’t have been in that position if he wasn’t in sepsis.”

The “highly invasive” surgery path for Evan, which would not change the size of his foot, entailed multiple surgeries before he turns 16, breaking his leg to lengthen the bones.

“Those procedures are horrific, it’s months of recovery,” Mrs Bayliss said. “It just takes your childhood.”

Identical twins Evan and Ethan. Picture: Supplied

Mr Bayliss said amputation instead was “highly likely”.

“We carry so much guilt now,” he said. “People say there’s nothing you can do but we knew it. The first thing I said [when he went into sepsis] was ‘that ... catheter’. We knew it.”

At a meeting with hospital staff in the immediate aftermath, Mr and Mrs Bayliss say Mater and QCH “all pointed fingers at each other”.

The couple are seeking more than $2.7 million in damages from the two hospitals.

They allege that as a result of the hospitals’ “negligence”, they each suffered psychiatric injury and were unable to continue operating their wedding business.

Mr and Mrs Bayliss ran the Sunshine Coast Wedding Expo but sold the business in August 2021. They then sold their elopement wedding planning service, Pash n Dash Weddings, in June 2023.

Evan was left with necrosis and muscle loss. Picture: Supplied

“It absolutely tore us apart,” Mr Bayliss said.

“We spent 10 years building these beautiful businesses and we were so proud of them … the next thing you know it led to a spiral. People don’t understand an event like this can absolutely destroy a family.”

The “sad irony”, Mrs Bayliss added, was that when the MCUG was eventually performed, Evan did not have PUV.

“They kept his catheter in there all that time and he didn’t need it,” she said.

“It’s the injuries and the legacy of this septic event that’s changed his life and our life forever. Evan’s not going to have the life he should have had, and unfortunately he has an identical brother he can compare himself to.”

The case was filed in the Brisbane Supreme Court on February 14 but is yet to be listed for hearing.

Both hospitals are defending the claim.

“Expert evidence supports that proper communication, reviews and management by the hospitals, would have likely avoided Evan’s injuries,” the family’s lawyer, Maurice Blackburn Queensland state leader Kirsten Van Der Wal, said in a statement.

“The hospitals’ failures have caused devastating and permanent injuries to Evan and psychological injury to his parents. Evan’s life will never be the same and his parents are now faced with making the agonising decision about Evan’s future treatments, including whether to have Evan’s leg amputated. This isn’t a decision any parent should have to make.

“We are seeking compensation from the hospitals for the psychiatric injury caused to the parents, including their inability to return to work, as well as for the avoidable injuries caused to Evan.”

A Mater spokesman said, “Mater is unable to comment on this ongoing case for legal reasons.”

Children’s Health Queensland said it was “not appropriate … to comment on a matter that is currently before the court”.

Originally published as Parents launch legal action over ‘awful decision’ to amputate four-year-old’s leg after alleged negligence