Sawong Kevin with mum Fetima Tingar and dad Kevin Mittiam.
Photo: Supplied / Sydney Children’s Hospital Network
A small conjoined twin from Papua New Guinea has finally flown home, six months after complex separation surgery in Australia which almost took his life.
Sawong Kevin developed a highly dangerous fungal infection of the blood after surviving twelve hours of separation and reconstruction surgery at Sydney Children’s Hospital on 7 December.
The two-month-old twins were fused at the lower abdomen and Tom, who was declining rapidly, died within minutes of being detached from his brother.
Six days later doctors feared Sawong, who was in an induced coma to help him heal, could also die.
“A doctor told us he had no white blood cells, that they should pray for him,” said a family spokesperson, Jurgen Ruh.
“I went to church with Sawong’s parents (Fetima Tangar and Kevin Mittiam) and we prayed he would survive. While in church I got a phone call from a doctor saying Sawong’s white blood cells had returned,” Ruh said.
The little baby needed physiotherapy and at one point was sleeping with his legs suspended in the air in a bid to stretch the muscles.
“He’s on the small side and his legs are turned outwards, he’ll walk, but with a different gait,” Ruh said, adding that Sawong could face further surgery to correct that.
“But he has everything he needs to life a healthy life and he is a happy, smiley boy,” he said.
Sawong was initially expected to return home to his remote village in Morobe Province at the end of February.
Sydney Children’s Hospitals Network’s Dr Ahmed Moustafa with Sawong.
Photo: Supplied / Sydney Children’s Hospital Network
However, Ruh said Sawong did not grow as fast as expected and needed additional nutrition, which he was receiving as an outpatient for the past two months.
The Australian government flew the eight-month-old and his parents to Brisbane on Wednesday, then Air Niugini flew them business class to Port Moresby. Both trips were free.
Ruh said there had been an emotional reunion with staff from both Port Moresby General Hospital and Paradise Private Hospital.
Sydney Children’s Hospitals Network chief executive Cathryn Cox said the medical journey with Sawong had been both challenging and deeply moving for everyone involved.
“This has been an extraordinary and emotional journey for Sawong and his family. Our teams felt privileged to care and support them through such a difficult time. Our thoughts remain with the family as they continue to grieve the loss of Tom,” Cox said.
The head of transplant surgery, Dr Gordon Thomas, is internationally recognised for his experience in complex paediatric surgery and conjoined twin separation. This was his third separation.
Thomas said seeing Sawong recover had meant a “great deal to the team” and “one of the highlights of our day was visiting him.”
“When we see him smiling and playing, it reminds us why this work matter so much. To know he now has the chance to grow up and live a full and happy life is incredibly special for everyone involved,” Thomas said.
Dr Gordon Thomas with Sawong and his parents, and Grace Centre for Newborn Intensive Care medical director and co-head Professor Nadia Badawi AM.
Photo: Supplied / Sydney Children’s Hospital Network
The boys, born on 9 October, shared a liver, bladder and parts of their gastrointestinal tract, but had their owns limbs and genitals.
They also had partial spina bifida – a neural tube defect that affects the development of a newborn’s spine and spinal cord. Tom also had a congenital heart defect, one kidney and malformed lungs.
The twins were initially receiving basic neonatal care at Port Moresby General Hospital (PMGH), where doctors explored the idea of transferring the twins to Sydney for separation surgery. However the plans fell through when funding from a charity was pulled.
The hospital later made a u-turn and advised the couple to take the boys home, or face the death of either one or both of them.
PMGH medical director Dr Koni Sobe said at the time that the boys’ prognosis was “extremely bad and their future “unpredictable”.
“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, Dr Kobe said previously.
The babies were moved to Paradise Private Hospital in Port Moresby to minimise the risk of cross-infection, including catching malaria.
What followed was weeks of tense wrangling over the viability of separation surgery, questions over which country would accept the case and who would finance the operation.
Time was running out for Tom, the weaker twin, and his parents defied medical advice and launched a desperate global plea to try and expedite surgery.
Ruh told RNZ Pacific at the time that at one point during negotiations, Sydney Children’s Hospital asked for $AU2 million to operate on the twins, but funds and guarantees could not be found.
Last November, a multi-disciplinary team from the hospital flew to Port Moresby to assess the babies, amid growing public pressure in PNG and Australia.
At the time the twins combined weight only 2.9kg, their situation was critical and the team recommended the boys be separated as soon as possible.
Tom, tiny and frail, had begun to rapidly deteriorate and they were finally medivacced to Sydney early December, where they underwent multiple investigations to define their anatomy and blood supply.
They were rushed into emergency surgery on 7 December, which involved a huge team, including liver surgeons, a colorectal surgeon, urologists, specialised cardiac anaesthetists, cardiologists, neonatologists and interventional radiologists.
“Sadly, Tom did not survive. His condition was very severe and despite every effort, the surgery could not save him,” the hospital said in a statement.
Tom’s parents spent hours cuddling the little boy after nursing staff took him from the operating theatre.
A massive funeral was held in Sydney for Tom, whose ashes will be scattered at his village, where there is no power or running water.
