Conjoined twins separated in Sydney, one twin dies

Giggling from his stroller, a baby is wheeled through the foyer of a large hospital in Sydney, beaming at the many doctors and nurses who stop to say "hello".

"Everyone loves him, he's a superstar," remarks Gordon Thomas, a paediatric transplant surgeon at Children's Hospital, Westmead, who operated on the child.

Sawong Kevin was born in remote Papua New Guinea in October. He was attached to his brother, Tom, at the chest, abdomen and pelvis.

The twins shared multiple major organs, and doctors knew if they weren’t separated, both would die.

They were flown to Port Moresby for care, but the country's underfunded health system did not have the means to surgically separate them.

The rare case drew international attention, with foreign governments and hospitals in Germany, India and Australia investigating ways to assist.

Eventually, a team of doctors from Sydney was invited to fly to Port Moresby and assess the twins.

Among them was Dr Thomas, who said a case like this only occurred every 10 or so years.

"There's nothing in the textbooks about a situation like this," Dr Thomas said.

"Every case of conjoined twins is unique in its own way."

Dr Thomas is among the team of specialists speaking exclusively with the ABC about the complex and detailed mission to save Sawong, and the heartbreaking sacrifice his brother Tom had to make.

'How do you explain that?'

Dr Thomas and the team spent days examining Tom and Sawong to determine whether they could be separated.

"We had lots of unusual clinical findings in the twins that we had to understand," he said.

"For instance, Tom's upper part of the body was completely blue, but the rest of his body was pink. How do you explain that?"

Working with the basic equipment available in Papua New Guinea, the team took scans, drew diagrams, and gradually built a picture of what was going on.

Tom and Sawong shared a liver, parts of their gastrointestinal tract, and several major blood vessels.

"They are complex and difficult problems to solve," Dr Thomas said.

Tom also had a congenital heart defect and tiny lungs, so was relying on Sawong to keep him alive.

"We could see Sawong breathing very fast. We could see him really hungry. We could see his heart beating very fast because he was actually doing the work of two," Dr Thomas said.

The prognosis they reached was difficult.

"Tom had a lot of anomalies that were incompatible with life," Dr Thomas said.

But Sawong was a different story.

"We saw a little baby who had a very good chance of survival, provided we could do a safe separation," Dr Thomas said.

"And we knew that if we didn't separate them, both would die."

The news brought a complex mixture of relief and devastation to the boy's parents, Fetima and Kevin Mitiam, but they agreed to transfer the twins to Sydney.

The race to save the twins

After days of meticulous planning, a small LifeFlight plane landed in Port Moresby to collect Tom and Sawong.

Tracey Lutz, a retrieval specialist and neonatologist, said it was not a typical airlift.

"It was always going to be a challenging mission because of the distance," Dr Lutz said.

"It took us over five hours out-of-hospital time."

That meant the team needed to be equipped to manage any possible deterioration in either twin's condition.

"I had to think about them in that way, not as an individual baby, but also as affecting each other," Dr Lutz said.

Even the cabin pressure in the plane had to be adjusted to make sure Tom's breathing difficulties weren't exacerbated during the flight.

When Tom and Sawong finally arrived at the Children's Hospital, Westmead, things were worse than the doctors thought.

"We actually discovered that we didn't have much time at all … we had to do an urgent separation," Dr Thomas said.

The marathon surgery took eight hours and involved five different specialist surgeons, a large team of anaesthetists, surgical nurses and other staff.

"You also anticipate that when you actually do the separation, you'll find things that you didn't see before," Dr Thomas said.

"So you make contingency plans for unexpected things that you see on the table."

During the operation, doctors discovered the boys shared more major blood vessels than they originally thought.

"The liver anatomy was also quite unique. They also had lots of shared … other organs in the pelvis and among the intestine as well," Dr Thomas said.

A painful loss

With tiny lungs and a congenital heart defect, Tom passed away almost instantly after the separation.

Although it was expected, his death was painful for his parents.

"I cannot forget the moment I lost Tom. It is like an open wound," Fetima said.

"I hoped that both would survive. But eventually Tom sacrificed for Sawong because he could not survive on his own. So he had to go."

While the loss continues to impact her, Fetima is focused on her other son, Sawong.

With wide eyes and a charismatic smile, he has become a star at the hospital where he continues to receive care.

"Everyone here loves him. He is a happy boy," she said.

Dr Thomas believes that is the ultimate sign of health.

"He's doing much, much better than we thought," he said.

"You take a lot of responsibility for putting your hand up to help in a situation like this.

"If it's a bad outcome, it's hard for yourself and for the family. If it's a good outcome, that's the best reward you can get. And this has been a great outcome."

Sawong and his family are preparing to return to Papua New Guinea in the coming weeks.

Dr Thomas said Sawong was unlikely to need more major surgeries and his care could be adequately managed in Papua New Guinea.

But there will always be a place for Sawong at this hospital if he needs it.

"If there was any major surgery planned and he needed it, then certainly we'd be able to help."

The family hopes the case will raise awareness about the need for improved medical services in Papua New Guinea, which has an infant mortality rate 10 times higher than Australia's.

This week, one of the country's leading obstetricians, Dr Glen Mola, urged families in Port Moresby against getting pregnant in the next year because the city's public maternity ward is so overrun.

"Since February, more than 30 women have [had] to tolerate part of their pregnancy, labour and delivery care on the floor." he wrote in a social media post.

"It is neither dignified nor safe … please do not plan a pregnancy for this year or next year."