3:56 pm today

'We're running out of time': PNG parents make desperate global plea to save conjoined twins

3:56 pm today
Dr Kone Sobi said it's a precarious condition for both as they depend on each other.

Dr Kone Sobi said it's a precarious condition for both as they depend on each other. Photo: Supplied / Port Moresby General Hospital

The parents of conjoined twins in Papua New Guinea have begun a desperate global appeal to try and get their sons surgically separated.

Tom and Sawong were born on 9 October and are joined at the abdomen. They are being looked after 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 one or both of them dying.

Doctors initially explored the possibility transferring them to Australia for specialist care, but the plan fell through. They have now said surgery is too dangerous and the twins should not travel overseas.

However, sponsors are hoping to fly the twins to Germany, where a major university hospital in Freiburg is assessing their case.

On Thursday, the parents initiated a world-wide mayday via text, which said:

"While communications with a hospital in Germany are progressing well, we are running out of time. Would anyone know anyone globally who can take on the twins swiftly?

"We continue to reach out to hospitals and specialists in Asia, Europe, America and beyond. If the reader of this mayday can assist or connect us to those who can help, please act now.

"This is not just a plea, but a call for support, compassion and action. Lets unite to give the twins the chance they deserve. Please contact us if you want to help them through this journey on (675) 72242188 or jruh@mamamedevac.org."

Port Moresby General Hospital's medical director Dr Kone Sobi said multiple discussions led to their final 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."

Tom and Sawong are joined at the abdomen and are being treated in Port Moresby General Hospital's neonatal unit.

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 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.

Jurgen Ruh, the helicopter pilot and sponsor who initially flew the newborns to Port Moresby, said the parents are getting desperate.

"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 will have 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 said.

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.

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