The twins en route to Sydney in an incubator Photo: Audrey Taula, Life Flight and NEST retrieval team
Surgery in Australia to separate fragile conjoined twins from Papua New Guinea is imminent, as one of the tiny boys is failing fast.
The twins reached a "critical point " and were medivacced from Port Moresby to Sydney last week following a medical recommendation that they be divided urgently.
The move followed weeks of tense wrangling over the viability of surgical separation, which country would accept the case and perform the operation and how it would be financed.
Specialists from the Sydney Children's Hospital Network flew to Port Moresby on Thursday to help transfer the babies to Sydney, where they are being looked after by a dedicated team.
Jurgen Ruh, the family's spokesperson, told RNZ Pacific that there was "no firm date" for the complex surgery but it was "imminent", because Tom was rapidly "going downhill."
He said the couple needed space following the intense media storm over the twins and had requested total privacy at this time.
"Today (Sunday) is a mute day, please pray for Tom, Sawong, their mother Fetima, their father Kevin and the amazing medical team in Sydney," Ruh said.
He said the couple had been through a "rollercoaster" of emotions since the twins were born in a remote village in Morobe province on 9 October.
"They have accepted that they will lose Tom (the weaker twin) and there's been many tears shed along the way," he said.
Sydney Children's Hospital demanded that funding to support the twin's care be paid prior to their transfer, and when asked how it was financed, Ruh said;
"It's a mixture of funding which took too long to organise."
RNZ Pacific understands that the parents had approached the PNG government for funding, but Ruh declined to confirm this.
The twins are fused at the lower abdomen but have their own limbs and genitals, however they share a single liver, bladder and parts of their gastrointestinal tract.
They also have spina bifida - a neural tube defect that affects the development of a newborn's spine and spinal cord. Tom has a congenital heart defect, only one kidney and malformed lungs.
Doctors at Port Moresby General Hospital initially explored the possibility of transferring the twins to Sydney, but the plans fell through when funding from a charity was pulled.
The hospital later made a u-turn and advised the couple to stay in PNG or face the death of one or both of the boys.
The medical director Dr Kone Sobi said multiple decisions led to their final decision, and added:
"The underlying thing is that both twins present with significant congenital anomalies and we feel that even with care and treatment in a highly specialised unit, the chances of survival are very very slim."
"In fact the prognosis is extremely bad and the twin's future is unpredictable,"he said.
The boys were moved to Paradise Private Hospital in Port Moresby two weeks ago in a bid to avoid cross-infection from other babies, particularly of malaria.
Amid growing public pressure in PNG and Australia, a multi-disciplinary team from Sydney Children's Hospital flew to Port Moresby on 21 November to assess the twins.
At that point the boys only had a combined weight of 2.9kg, and Tom, the smaller twin, was relying on Sawong to keep him alive.
In a letter to doctors in PNG, the Sydney team said surgery was feasible and while Sawong had a reasonable chance of surviving, Tom did not.
"The reason for the early separation is that Sawong is working hard to support Tom. This is also why the team has recommended transfer as soon as possible with specialised transport with a medical and nursing team," the letter said.
"They will have multiple investigations, including an MRI scan and CT scans with contrast to define their anatomy and vascular supply."
"A multi-disciplinary team including liver surgeons, colorectal surgeon and urologists, specialised cardiac anaesthetists, cardiologists, neonatologists and interventional radiologists will then prepare for the separation of the twins," the letter said.
It said they would be supported by a large team of nursing and allied staff.
