Tom and Sawong are joined at the abdomen and are being treated in Port Moresby General Hospital's neonatal unit. Photo: Supplied / Port Moresby General Hospital
The parents of conjoined twins in Papua New Guinea are fighting for surgery for their sons despite medical advice against it.
Tom and Sawong were born on 9 October and are joined at the abdomen. They are being treated in Port Moresby General Hospital's neonatal unit.
The hospital made a u-turn on Tuesday and advised the family to remain in PNG or face the risk of one or both of them dying.
Doctors at the Port Moresby General Hospital initially explored the possibility transferring them to Australia for specialist care, but the hospital is now recommending against sending them overseas.
Medical director Dr Kone Sobi said multiple discussions led to this decision.
"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," Sobi said.
"In fact, the prognosis is extremely bad."
Dr Kone Sobi said it's a precarious condition for both as they depend on each other. Photo: Supplied / Port Moresby General Hospital
The twins have spina bifida - a neural tube defect that affects the development of newborn's spine and spinal cord - and share a liver, bladder and portions of their gastrointestinal tract.
Sobi said the medical complications made surgery dangerous.
"One of the twins has a congenital heart defect, the same twin also has only one kidney and we believe malformed lungs," he said.
"So one of the twins is doing a lot of the work in terms of supplying oxygen for the heart for the other one."
The twins' future was unpredictable, he said.
"It's a precarious condition for both, they both depend on each other really, where they go from here is anyone's guess.
"In our view, as long as we provide support to them in terms of feeding them, that one of our priorities, and guarding against infection, because they are in a very difficult situation at this point in time," he said.
However, sponsors are hoping to fly the twins to Germany, where a major university hospital in Freiburg is assessing their case.
Air Niugini has offered to fly them as far as Singapore, but another airline willing to take them to Germany still has to be found.
Mother Fatima and father Kevin seen looking at their newborn conjoined twins. Photo: Supplied
'They just feel at least they tried'
Jurgen Ruh, the helicopter pilot and sponsor who initially flew the newborns to Port Moresby, said the parents are desperate to do the right thing.
"They're just trusting that something will happen for the children, they're looking forward to care in a better facility."
"They are aware that one or both could be lost during the operation, but they just feel at least they tried," Ruh said.
He said the twins have so far battled the odds.
"The children are doing well, they've got minimal support, like supplementary oxygen, and they're being fed.
"Considering that they're not on life support and they've lived for one month, they have a will to live and they'll continue living."
He added that he was optimistic that surgery in Germany would go ahead.
"Once the hospital issues the paperwork that they're accepting the patients, that'll be presented to the German embassy in Manila, who will then issue the visa," Ruh said.
"I can't really say how long it will take, we don't have much time as the smaller twin has a heart defect and he needs neonatal open heart surgery."
Doctors in PNG say they are not stopping anyone from taking on the case, but they must be prepared to deal with the risks.
