Photo: Supplied/Jurgen Ruh/Manolos Aviation

The parents of rare conjoined twins say doctors in Papua New Guinea told them to take the boys home as they were beyond hope.

"Thank God we [defied them] and we are where we are," the boys' dad Kevin Mitiam, who is also a twin, said in Tok Pisin.

Tom and Sawong - who were fused at the lower abdomen - had unplanned emergency surgery to divide them at Sydney Children's Hospital on 7 December.

The surgery was brought forward as Tom, the weaker twin, was deteriorating rapidly. A large multi-disciplinary team took seven hours to separate the boys but Tom died soon after he was detached from his brother.

The team spent a further five hours working on Sawong, who is doing well and could return home by the end of February.

"The Port Moresby General Hospital paediatrician team told us [twice] to go back home, that there was no hope for them," their mum Fetima said in Tok Pisin.

"We were even told not to trust Jurgen Ruh [the family's spokesperson] because they said he was giving

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