Urgent Surgery Imminent for Conjoined Twins from Papua New Guinea

Surgery to separate two fragile conjoined twins from Papua New Guinea is expected to occur shortly, as one of the boys, Tom, is experiencing rapid health decline. The twins were medivacced from Port Moresby to Sydney last week after medical professionals deemed their separation urgent due to their critical condition.

The twins, Tom and Sawong, have reached a “critical point” in their health, prompting weeks of complex discussions regarding their surgical separation. These discussions involved considerations of which country would accept the case, how the operation would be financed, and the overall viability of the procedure. Specialists from the Sydney Children’s Hospital Network travelled to Port Moresby to assist with their transfer.

Family Requests Privacy Amid Crisis

Jurgen Ruh, the family’s spokesperson, informed RNZ Pacific that while there is “no firm date” for the surgery, it is “imminent” due to Tom’s deteriorating condition. The family has requested privacy following intense media attention surrounding the twins. “Today is a mute day, please pray for Tom, Sawong, their mother Fetima, their father Kevin, and the amazing medical team in Sydney,” Ruh stated.

The couple, who welcomed their twins on October 9, 2023, in a remote village in Morobe province, have been navigating a tumultuous emotional journey since their birth. Ruh mentioned that they have accepted the likelihood of losing Tom, leading to many tears along the way.

Funding concerns also complicated the situation. The Sydney Children’s Hospital required financial arrangements to be in place prior to the twins’ transfer. While Ruh did not confirm whether the parents sought financial support from the Papua New Guinea government, he acknowledged that the funding process took longer than anticipated.

Medical Challenges and Prognosis

The twins are conjoined at the lower abdomen but have separate limbs and genitals. They share vital organs, including a single liver and bladder, and parts of their gastrointestinal tract. Both boys also suffer from spina bifida, a defect affecting spinal development. Tom has additional complications, including a congenital heart defect, only one kidney, and malformed lungs.

Initially, doctors at Port Moresby General Hospital explored transferring the twins to Sydney but faced setbacks when funding from a charity was withdrawn. Following this, the hospital advised the family to remain in Papua New Guinea or risk the death of one or both boys. Dr. Kone Sobi, the medical director, emphasized the significant congenital anomalies affecting the twins and described the prognosis as “extremely bad.”

In response to escalating public pressure in both Papua New Guinea and Australia, a multi-disciplinary team from Sydney Children’s Hospital arrived in Port Moresby on November 21, 2023, to assess the twins’ condition. At that time, the boys had a combined weight of only 2.9 kg, with Tom relying heavily on Sawong for survival.

A letter from the Sydney medical team indicated that while surgery was feasible, Sawong had a reasonable chance of survival, whereas Tom’s chances were grim. “The reason for the early separation is that Sawong is working hard to support Tom,” the correspondence noted. This urgency underscores the need for specialized transport with medical personnel for their transfer to Sydney.

Once in Sydney, a multi-disciplinary team, including liver surgeons, urologists, and cardiologists, will prepare for the surgery, supported by nursing and allied staff. The twins will undergo extensive examinations, including MRI and CT scans, to assess their anatomy and vascular needs.

The situation remains critical as the family and medical teams prepare for a complex and challenging road ahead. The twins’ health and future depend on the success of the imminent surgery and the support they receive from both medical professionals and their community.