Calls mount for a 'second medical opinion' hotline after baby Caleb's misdiagnosis

What about a medical second opinion?

There are increasing calls to instigate a hotline for patients who want a second opinion for their condition if they feel they are not being heard or correctly diagnosed.

Sara Wayu had only been a mother for a few hours, but her instincts told her something wasn't right.

"Even though I had never had a baby before, I knew his crying was not normal," she said.

"It was like someone in pain."

Sara Wayu with her son Caleb and the medical supplies he needs.
Sara Wayu with her son Caleb and the medical supplies he needs. Photo: Jason South

As her baby’s condition worsened, Sara said she was repeatedly told by staff at the Royal Women’s Hospital in Melbourne that everything was "normal".

Even when little Caleb Guyasa started vomiting up green liquid, Sara said this was brushed off by a nurse as fluid he had likely ingested in the womb.

Caleb’s story is now one of the harrowing cases being used to argue for a national hotline where patients or their families can call for a medical second opinion.

National health safety standards say hospitals should have a system that allows patients to have their cases reviewed. But procedures, and awareness of them, vary from hospital to hospital in a number of states.

The green vomit in Caleb’s case was, as his mother suspected, a clue to something serious. It's understood that he had a twisted bowel, which as the hours ticked by had begun rotting, triggering an infection.

Lawyers for the family would later argue Caleb could have been treated successfully if the problem had been recognised earlier, saying that the green vomit, actually bile, was a classic symptom of a bowel obstruction.

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Two nights after he was born, Caleb went limp in this mother’s arms, and they were thrust into a medical emergency.

Sara, a trained nurse herself, said she was taken into a room and asked if she understood her son might die.

"And I just started vomiting," she said.

Caleb was in a coma for almost two months and lost 90 per cent of his intestines after he was born with a twisted bowel.
Caleb was in a coma for almost two months and lost 90 per cent of his intestines after he was born with a twisted bowel. Photo: Supplied

"It just didn’t make sense to be told that it was normal, then all of a sudden to be losing your baby."

Caleb survived, a happy four year old today, though with permanent and significant disability. He spent seven months in hospital, including more than two months in a coma, and lost 90 per cent of his intestines.

He can’t absorb any food through his remaining gut, so is fed nutrients through a vein close to his heart for 14 hours each night.

Caleb, now four, has to be fed nutrients through a vein close to his heart for 14 hours each night.
Caleb, now four, has to be fed nutrients through a vein close to his heart for 14 hours each night. Photo: Jason South

Law firm Maurice Blackburn, which has represented families in a number of high-profile medical negligence cases, is calling for national hotline, similar to Ryan’s Rule in Queensland, to be introduced nationwide.

"People have been telling us 'we know we aren’t medically trained, but we’re best placed to know when something is wrong, particularly with a child'," the firm’s head of medical negligence Dimitra Dubrow said.

Ryan’s Rule saw a Queensland Health hotline established for patients who feel like their concerns are not being listened to. Those answering the call will ask for the patient’s name and bed number. Some hospitals will send a crash team, others will dispatch the most senior clinician available at the time, but the response is generally swift and significant.

Lachlan Black, the toddler who died after visiting six doctors in five days.
Lachlan Black, the toddler who died after visiting six doctors in five days. Photo: Supplied

The rule was named after toddler, Ryan Saunders, who died a preventable death at Rockhampton Base Hospital in 2007, from an infection that was not detected as early as it should have been.

Dr John Wakefield, who helped develop Ryan’s Rule, said doctors were initially concerned they would be flooded with calls, but in practice only about two calls are received each day across 114 public hospitals.

Not all of the calls are genuine medical emergencies – but that was not necessarily a concern.

"If the Ryan’s Rule call comes we respond first and then ask questions later. If we dive in and get there and really the patient is fine … that’s fine, we’ll listen to them and see what we can do to help them," Dr Wakefield said.

New South Wales has a similar rapid-response program called REACH that is active in 169 public hospitals.

In Victoria, healthcare safety agency Safer Care Victoria says it is "currently exploring the merits of a centralised care escalation system".

As it stands, different hospitals have different protocols - some of them prompted by other tragedies.

Monash Health in Melbourne introduced a program allowing a patient’s care to be "escalated" by worried family members following the death of two-year-old Lachlan Black, who was seen by six doctors in four days before he was diagnosed, too late, with septicaemia.

Lachlan's mother Angela Black said all too often parents were treated like they did not know anything, when "really we are the best barometer of how our child is".

A formal patient escalation procedure has also been introduced at the Royal Women’s Hospital since Caleb’s birth in 2013.

Sara said she hopes that no other family has to again endure the trauma she did.

"If there was someone that had actually listened to our concerns, things could have been really different, and Caleb could have had a normal childhood," she said.

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