Tom and Sawrong, conjoined twins, were born on October 9 in a rural area of Papua New Guinea. They are in immediate need of specialized, trauma-informed medical care. Since the twins are attached in the lower abdomen, that creates a major complication. One of the twins has a congenital heart defect, while the other is only fitted with one kidney. Fatima Tinga and Kevin Mitiam, the twins’ parents, are in dire need of medical care. Now, their plans to go to Sydney for surgery have hit a huge roadblock with the cost of travel proving prohibitive.
The twins’ condition is highly unusual, affecting only one or two in every 100,000 births. Experts are united in the belief that a separation procedure is necessary if Tom and Sawrong are to have any chance of survival. Yet the complexity of the surgery needs for such a highly specialized medical team has made their family seek options outside of Australia.
Changing Plans for Treatment
At first, Fatima Tinga and Kevin Mitiam dreamed of flying their children to Sydney for care. Discussion with members of the Sydney Children’s Hospitals Network validated that important development. They announced that the referral will no longer proceed due to budgetary limitations.
A spokesperson for the Sydney Children’s Hospital stated, “The Sydney Children’s Hospitals Network is in regular contact with Port Moresby General Hospital and understands the referral is no longer proceeding.”
Fatima expressed her distress regarding the situation, saying, “It would be at a cost that is far too high, so they said they are looking at other avenues.” The severity of their circumstance requires swift judgment, as waiting can be deadly.
Captain Jurgen Ruh, a former airline pilot and current CEO of the Mountain Area Medical Airlift (MAMAA) foundation. He has even been proactive enough to start arranging a possible transfer to Freiburg University Medical Center in Germany. He emphasized the seriousness of the twins’ condition, stating, “It has become obvious that they are in a condition where anything can happen, and I just hope things move a little faster.”
Medical Logistics and Challenges
Transporting Tom and Sawrong to Germany requires considerable logistical maneuvers. Future plans involve working with commercial airlines so that an incubator and portable oxygen supply can be provided for the twins when using multi-leg flights to get home. This new layer of complexity makes the need to act that much more compelling.
Jurgen Ruh reminded all that he feels the emotional burden of the new responsibility he is taking on in this process. “He looked straight into my eyes, and he had that expression in his face like he was trying to say, ‘I just want to live,’” he recalled. The promise to get the twins the best medical care possible motivates each party to keep the process moving quickly.
Fatima Tinga articulated her desperate need for timely medical intervention: “I really need our doctors to work quickly on my babies to save their lives.” The family continues to hope for quick arrangements for that to happen. Their hope is that Tom and Sawrong get the care they need as soon as possible without further delay.
The Role of Organizations and Support
ROMAC (Rotary Oceania Medical Aid for Children) is a Rotary organization that has played a significant role in the ongoing assessment of the twins’ condition. Glenys Parton, chair of ROMAC, stated that it became clear how serious their situation was: “It became clear that the twins’ condition was extremely serious, with a very low likelihood of survival.”
Parton continued that these decisions against providing assistance in cases like these are made with a great sense of anguish. “These situations are deeply distressing for everyone involved, and decisions not to assist are made only after careful consideration and with heavy hearts,” she said.
Meanwhile, the family’s story illustrates the greater plight of our nation’s working-class families. It highlights the burdens that so many families face when raising children with complex medical needs. Community support is key as they figure out this new terrain. At the same time, global partnership advances Tom’s and Sawrong’s access to life-saving treatments.
