Papua New Guinea conjoined twins. Photo: Audrey Taula / Life Flight and NEST retrieval team
A conjoined twin from Papua New Guinea is in an induced coma following twelve hours of separation surgery and reconstruction in Australia.
Tom and Sawong, who were fused at the lower abdomen, had unplanned emergency surgery at Sydney Children's Hospital on Sunday after Tom began to deteriorate rapidly.
The tiny, frail baby died within minutes of being detached from his brother and Sawong is in a critical but stable condition.
It took a large multidisciplinary team seven hours to separate the babies and a further five hours to work on Sawong.
A family spokesperson told RNZ Pacific that at one stage during negotiations the hospital requested $AU2 million to operate on the twins but funds and guarantees could not be found.
Sawong is expected to remain in a coma in the intensive care unit for weeks, to reduce movement and pain while he heals.
The two-month-olds were medivacced from Port Moresby to Sydney on Thursday following medical advice that they undergo urgent surgery.
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.
Sydney Children's Hospital declined to comment before the surgery, as the parents had requested total privacy.
Jurgen Ruh, the family's spokesperson said the surgery was initially planned for this week but concerns mounted that Tom was adversely effecting Sawong's health.
The twins shared a liver, bladder and parts of their gastrointestinal tract, but had their owns limbs and genitals.
They also had spina bifida - a neural tube defect that affects the development of a newborn's spine and spinal cord. Tom had a congenital heart defect, one kidney and malformed lungs.
"After carrying out investigations before the surgery, the medical team [in Sydney] said it was a miracle that Tom had survived for two months," Ruh said.
Papua New Guinea conjoined twins Photo: Supplied / Manolos Aviation
Bittersweet
While the complex surgery was a success, the results were bittersweet for the parents Fetima and Kevin.
"I thought it was amazing, after the operation a nurse gave the little boy to them and they spent hours just cuddling him," he said.
"One body with two souls went into the operating theatre, then we had two bodies and two souls. Sadly we lost Tom but are happy to report that we still have two souls."
Ruh previously told RNZ Pacific the boys' parents had been through a "rollercoaster" of emotions since the twins were born in a remote village in Morobe province on 9 October.
"They had accepted that they would lose Tom (the weaker twin) and there's been many tears shed along the way," he said previously.
RNZ Pacific understands that the parents had approached the PNG government for funding, but Ruh would not confirm this.
The ABC reported that the hospital had asked for payment before the twins were transferred from PNG, however Ruh said as far as he knew no money had changed hands.
When asked how it was financed he said: "It's a mixture of funding which took too long to organise."
"It should never have taken eights weeks to get the twins separated, it should have happened in eight days, but no referral pathway [to a foreign hospital] exists," Ruh said.
He laid the blame on the PNG health system, and said babies born prematurely or with birth defects were lost in the system.
"It was a very disappointing ride (journey) we had, in terms of overall support from Port Moresby General Hospital. Then there were delays in getting them to Australia."
"We were exploring faster options, but we did not have any support," 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. Photo: Supplied / Port Moresby General Hospital
Race against time
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 surgeons 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.