Source: Radio New Zealand
Conjoined twin Sawong from PNG wears a party hat as his family and staff at Sydney Children’s Hospital celebrate him reaching 100 days old. Supplied/Jurgen Ruh/Manolos Aviation
The parents of rare conjoined twins say doctors in Papua New Guinea told them to take the boys home as they were beyond hope.
“Thank God we [defied them] and we are where we are,” the boys’ dad Kevin Mitiam, who is also a twin, said in Tok Pisin.
Tom and Sawong – who were fused at the lower abdomen – had unplanned emergency surgery to divide them at Sydney Children’s Hospital on 7 December.
The surgery was brought forward as Tom, the weaker twin, was deteriorating rapidly. A large multi-disciplinary team took seven hours to separate the boys but Tom died soon after he was detached from his brother.
The team spent a further five hours working on Sawong, who is doing well and could return home by the end of February.
“The Port Moresby General Hospital paediatrician team told us [twice] to go back home, that there was no hope for them,” their mum Fetima said in Tok Pisin.
“We were even told not to trust Jurgen Ruh [the family’s spokesperson] because they said he was giving us false hope.
“I am happy and I laugh when I see my baby Sawong and think about that advice,” she said.
“I am full of hope, I cuddle him and talk to him every day, as he grows.”
RNZ Pacific has reached out to Port Moresby General Hospital for a response.
The two-month-olds were medivacced from Port Moresby to Sydney on 4 December, following medical advice that they undergo urgent surgery.
The move followed weeks of tense wrangling over the viability of separating them, which country would accept the case and perform the operation, and how it would be financed.
The boys 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.
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 either one or both of the boys.
The medical director Dr Kone Sobi said previously that multiple discussions 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.”
Manolos Aviation pilot Jurgen Ruh with Sawong at Sydney Children’s Hospital. Ruh flew Sawong and his conjoined twin Tom to Port Moresby General Hospital from their home in remote Morobe Province after they were born. Supplied/ Jurgen Ruh/ Manolo Aviation
Ruh told RNZ Pacific on Thursday that although Sawong remains in intensive care, monitored constantly by a specialist nurse, he is “strong and doing well”.
He was no longer on a ventilator, did not need supplementary oxygen and was gaining about 50 grams a day in weight, he said.
“The hose fitting on his nose is simply to monitor his breathing and to assist a little with extra pressure in his lungs.
“Doctors have now closed up a hole in his stomach with stretched skin and he is improving every day, but it will be another month or so before he is released, possibly by the end of February.
“Occasionally Sawong gives the biggest smile on earth; he is just happy with what he has.”
The hospital recently celebrated Sawong’s reaching 100 days old with a simple but touching celebration.
“It threw a little party for Sawong, his parents and all the staff who have been part of his journey. Fetima cut a frozen cheesecake on his behalf,” Ruh said.
A massive funeral for Tom was held a month ago at the Mega Church in Hillsong, Sydney.
The family are expected to scatter his ashes after they return home to their remote village in PNG’s Morobe Province.
While the complex surgery was a success, the results were bittersweet for the parents.
“I thought it was amazing, after the surgery a nurse gave Tom to them and they spent hours just cuddling him,” Ruh previously told RNZ Pacific.
The parents had been through a “rollercoaster” of emotions since the twins were born on 9 October.
“They had accepted that they would lose Tom and there’s been many tears shed along the way,” he said previously.
Ruh said last month that at one stage during negotiations the Sydney Children’s Hospital requested AUD$2 million to do the operation, but funds and guarantees could not be found.
RNZ Pacific understands that the parents had approached the PNG government for funding, but Ruh would not confirm this.
The ABC had 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 eight 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 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.”
The boys were eventually moved from the public hospital to Paradise Private Hospital in Port Moresby, which provided them with free care.
The family felt the twins would be “safer” and have less chance of cross-infection from other babies, particularly of malaria.
A multi-disciplinary team from Sydney Children’s Hospital flew to Port Moresby on 21 November to assess the twins, amid growing public pressure in Australia and PNG.
At that point the boys only had a combined weight of 2.9kg, and Tom was relying on Sawong to keep him alive.
Sawong (left) and Tom while they were being treated in Port Moresby General Hospital’s neonatal unit last year. Supplied / Port Moresby General Hospital
In a letter to doctors in PNG, the Sydney team said surgery was in fact feasible although Tom was not expected to survive it.
“The reason for the early separation is that Sawong is working hard to support Tom,” the letter said.
The team had recommended the twins be urgently transferred in a specialised aircraft with intensive care facilities plus medical and nursing personnel.
The boys underwent multiple investigations at Sydney Children’s Hospital, including an MRI and CT scan to define their anatomy and vascular supply.
“Before the surgery, the medical team [in Sydney] said it was a miracle that Tom had survived for two months,” Ruh said previously.
A huge team including liver surgeons, colorectal surgeons and urologists, specialised cardiac anaesthetists, cardiologists, neonatologists and interventional radiologists were involved in the surgery, supported by a large team of nursing and allied staff.
– Published by EveningReport.nz and AsiaPacificReport.nz, see: MIL OSI in partnership with Radio New Zealand