Australian doctors visit rare PNG conjoined twins to assess options
Tom and Sawong were born on October 9, joined at the lower abdomen. (Supplied)
A team of specialised doctors from Sydney has flown to Papua New Guinea to determine whether a rare set of conjoined twins can be surgically separated.
The brothers, Tom and Sawong, were born six weeks ago in remote Papua New Guinea and are still alive despite fears they may not survive.
Joined at the lower abdomen, the boys share a single liver and portions of their gastrointestinal tract. Tom, the smaller twin, also has a congenital heart defect and only one kidney.
This week, the ABC was granted exclusive access to visit the twins in a neonatal intensive unit at the private hospital in Port Moresby where they are currently receiving care.
Lying face-to-face in a plastic incubator surrounded by soft pillows and blankets, the boys sleep peacefully, legs tangled around one another.
Now and then, they will stir: a clenching fist, a batting eyelid, the twitch of a mouth — signs of life that bring comfort to their parents and medical team.
Every hour, specialist nurses open the cot to reposition the twins and feed them.
While Tom cannot receive nutrition orally and is fed through a nasogastric tube, Sawong drinks from a delicate syringe connected to his mouth.
As he suckles, Sawong's big eyes flick open, staring up at the Papua New Guinean nurse tending to him.
'One body, two souls'
The boys were delivered at a small hospital in rural Papua New Guinea. (Supplied)
"One body, two souls," muses Jurgen Ruh, a pilot who has been supporting the family.
It's what he wrote on the flight plan he submitted before airlifting the twins from Lae to Port Moresby not long after their birth — the beginning of a long journey that he says still isn't over.
Mr Ruh owns an aviation company that provides medevacs for patients in remote Papua New Guinea.
But since meeting Tom and Sawong, he's spent much of his time fighting to have them sent overseas because the surgery needed to separate them cannot be performed in Papua New Guinea.
"If you leave the children here where they are totally unattended or without any options, it is certain one will die and take the other one with him," Mr Ruh said.
"It's an awful death for the twins … and all the parents want is that we try something."
Twins kept in PNG
The Port Moresby General Hospital, where the twins were initially treated, made enquiries about sending them to Sydney, but later said the referral was too risky.
CEO Dr Paki Molumi said the decision to keep them in Papua New Guinea was taken after consultation with Australian doctors, and the likelihood of both twins surviving separation was extremely low.
"Taking all these factors into account, our team collectively agreed that it is in the best interest of the twins and their family to continue care here at the Port Moresby General Hospital," he said at the time.
The twins have been moved out of Port Moresby General Hospital. (ABC News: Hugo Hodge)
Australia's Department of Foreign Affairs and Trade said funding was not a factor in the decision.
But the parents last week decided to move Tom and Sawong out of the public system and into a private facility where they have now been given their own ward and a dedicated team of nurses.
"It's the best environment we can provide for them in Papua New Guinea, taking into consideration possible cross-infections and catching of malaria," Mr Ruh said.
Janet Sios, who co-owns Paradise Private Hospital with her husband Dr Robin Sios, said it was a privilege to help the boys.
"I feel as a mother, what can I do? What can I do? Is there anything else I could do?" she tells the ABC.
"They can stay as long as they want in this unit. This is all for them with their parents."
Open to anyone helping
On Thursday, a team of doctors from the Sydney Children's Hospitals Network arrived in Port Moresby to assess the twins and provide advice on whether they can be separated.
They declined the ABC's interview requests, with a spokeswoman saying their priority was gathering information and meeting with the family, and a transfer to Australia was not guaranteed.
Janet Sios said she hoped they could find a way forward.
"We are working with specialists from Australia. We are looking at every option for them,"Ms Sios said.
Earlier this month a spokesperson for Foreign Minister Penny Wong said the Australian government was "working closely with our partners in Papua New Guinea to help ensure the twins receive the best medical care”.
"Our thoughts are with the family during this incredibly distressing time," the spokesperson said.
The brothers were born in remote Papua New Guinea in early October and airlifted to Port Moresby. (ABC News: Marian Faa)
Jurgen Ruh said the parents, who asked him to speak on their behalf, were emotionally drained but still clinging to hope.
"It's been a long journey and it's very emotional. Today I think was, for all of us, a rough ride," he said.
"We've been talking to three different countries to hopefully take on the twins and whoever is the first one with the solution we'll most likely go with it.
"We're open to anyone and everyone to help us."
He said he believed the brothers had a fighting spirit.
"They are survivors and they want to live."