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

Tom and Sawong were born on October 9 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.

• READ MORE: ‘A long journey’: Hopes for PNG conjoined twins to receive treatment in Germany

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.

Mayday call
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,” Dr Sobi said.

“In fact, the prognosis is extremely bad.”

Surgery dangerous
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.

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

This article is republished under a community partnership agreement with RNZ.

Two LGBTQIA+ advocates in the Northern Mariana Islands (CNMI) are up in arms over US President Donald Trump’s executive order rolling back protections for transgender people and terminating diversity, equity and inclusion programs within the federal government.

Pride Marianas founder Roberto Santos said Trump’s initiatives against the diversity, equity, and inclusion (DEI) policy were no surprise.

“While we know policies and practices promoting these values have proven to be positive, we know how futile it is to convince Trump or his supporters that diversity, equity and inclusion are human rights.”

• READ MORE: Other LGBTQIA+ reports

Transgender rights have become a contentious political topic in recent years. During November’s election season, many Republicans campaigned on reversing transgender laws with a particular focus on transgender women participating in sports.

In his inauguration speech, Trump said: “This week, I will also end the government policy of trying to socially engineer race and gender into every aspect of public and private life.

“We will forge a society that is colourblind and merit based. As of today, it will henceforth be the official policy of the United States government that there are only two genders — male and female.”

Last month, the US Supreme Court tackled a major transgender rights case, and its conservative justices asked tough questions of lawyers challenging the legality of a Republican-backed ban in Tennessee on gender-affirming medical care for transgender minors.

Challenging argument
Santos presented an argument to Trump’s position on two genders and his declaration they could not be changed.

“To speak specifically to his statement about there being two and only two genders, I believe he’s referring to what we call biological or anatomical sex, and the construct of male and female as gender is a social construction,” Santos said.

“So, the inaccurate terminology he’s using is a testament to how ill-informed he is on the matter.”

Marianas Business Network president and founder PK Phommachanh-Daigo, meanwhile, discussed his journey as a Southeast Asian refugee from Laos in response to the diversity question under the second Trump administration.

“My family and I were sponsored by an Irish family in a small, conservative town in northeastern Connecticut. Growing up as the youngest of six children, with my eldest sibling 15 years older, we were culturally accustomed to a straightforward view of gender — male, female, or ladyboy, a concept common in Southeast Asia.

“It’s clear that the current debate over gender and DEI programmes is more politically charged in the US, especially among Republican and liberal factions.”

On Trump’s announcement to recognise only two genders and eliminate DEI programmes, Phommachanh-Daigo said it was not surprising “given the ongoing cultural war between the MAGA (Make America Great Again) movement and the so-called ‘woke’ culture”.

“The elimination of DEI programmes could potentially lead to a regression into systematic exclusion and discrimination, perpetuating cycles of inequity and racism.”

Cultural richness
He said this was in sharp contrast to the CNMI community, which was deeply rooted in cultural richness and familial bonds.

“We are generally accepting of people regardless of their gender or sexual orientation,” he said.

“Societal issues often stem from external influences rather than within our tight-knit local community. While the immediate impact on our government workforce may be minimal due to strong familial ties and the predominance of local employees, the long-term implications of eliminating DEI initiatives could erode the inclusive environment we strive to maintain.”

The message to the LGBTQIA+ community in the CNMI message is for them to just focus on personal growth, family, and positive contributions to society, regardless of the policies of the new Trump administration.

“Be a role model for others, and continue to foster a community that values acceptance, understanding, and mutual respect.”

This article is republished under a community partnership agreement with RNZ.

It isn’t every day that a doctor will follow up with a patient and check how he or she is doing all the way to their very doorstep in Papua New Guinea.

For one family from Eboa village in Mekeo LLG, Kairuku in Central Province, their weekend was filled with a pleasant surprise as a team of doctors paid a visit to their little warrior named Taylor.

Three-month-old baby boy Taylor is a miracle, said Dr Liu Zhenqui, who is deputy captain of the 12th China Medical Team and also an associate professor of paediatrics at the Port Moresby General Hospital (PMGH).

• READ MORE: Other PNG health reports

Little Taylor’s story is one filled with love of a mother, support of a family, and little Taylor’s determination and resilience to live. Taylor was born with a severe respiratory failure which posed a significant threat to his life.

“We learned from the video that just a few months ago newborn Taylor faced a severe respiratory failure, posing a significant threat to his life,” Dr Liu said.

“However, through the combined efforts of the China Medical Team and the SCN at PMGH, we employed cutting-edge techniques called ventilation and advanced medical care to save Taylor’s precious life.

“Taylor’s journey to recovery can only be described as a miracle.

“From the day he came under our care, we knew that every second was crucial.

“Our dedicated healthcare professionals worked tirelessly day and night, leaving no effort spared to provide Taylor with the best possible care,” he added.

Dr Liu said that the “love and dedication poured into his treatment” not only saved his life but also strengthened the bond between the medical team and the local community”.

It was also an honour to have Sister Kuman, the head nurse of Special Care Nursery at PMGH, with the team, he said.

Since they had missed out on how Taylor’s life began at the hospital, his relatives all gathered around a laptop to watch the video and were deeply moved and amazed by his determination and resilience.

“Today, witnessing Taylor’s radiant smile and remarkable progress fills our hearts with immense joy, serving as compelling evidence of the boundless potential in every newborn.

“He stands as a living example, proving that with the right medical care, love, and support, even the tiniest of lives can overcome challenges and flourish,” Dr Liu said.

In fact, Dr Liu was a retained member of the China Medical Team — he had been due to return to China in July last year.

However, he made the decision to stay because of witnessing a mother’s sorrow.

“One day in early last year, a full-term baby was diagnosed with asphyxia and meconium aspiration syndrome, precisely the same diagnosis as Taylor.

“Unfortunately, due to severe respiratory failure, the child passed away.

“The mother, overwhelmed with grief, fainted upon seeing her baby’s lifeless body.

“From that moment on, ‘I made a silent vow in my heart to do something to change this situation,'” Dr Liu said.

Grace Auka Salmang is a PNG Post-Courier reporter. Republished with permission.

The parents of a New Zealand baby at the centre of a legal dispute that has made global headlines will not be appealing against a judge’s decision to hand guardianship of the child to the High Court.

The four-month-old — known only as Baby W — requires urgent open heart surgery, with both blood and blood products required for the operation and potentially its aftermath.

Te Whatu Ora/Health New Zealand took the case to court because the parents refused to allow blood transfusions from anyone who might have had the Pfizer covid-19 vaccine.

• READ MORE: Vaccinated donor blood: Parents’ meeting with doctors ‘hijacked’ by anti-vax support person
• LISTEN TO RNZ MORNING REPORT: Interview with University of Otago bioethics lecturer Josephine Johnstone duration

The NZ Blood Service does not differentiate between blood from vaccinated and non-vaccinated people, saying there was “no evidence that previous vaccination affects the quality of blood for transfusion”.

A judge on Wednesday ruled in favour of Te Whatu Ora, allowing the surgery to go ahead with whatever product the NZ Blood Service provides. Doctors, having been made agents of the court for the surgery, said on Wednesday afternoon they would be ready to operate within 48 hours.

The family’s lawyer Sue Grey and high-profile media supporter Liz Gunn said this morning there was no time to appeal against the court’s decision, but they had confidence the child would “get the best possible care with the best, safest blood” because “the government cannot afford anything to go wrong for Baby W as the world is watching”.

“The priority for the family is to enjoy a peaceful time with their baby until the operation, and to support him through the operation,” the pair said in a post on the New Zealand Outdoors and Freedom Party Facebook page.

Grey co-leads the party.

The baby will be in intensive care for up to a week and under Te Whatu Ora’s guardianship possibly until the end of January, allowing time for their recovery. The doctors were told to keep the parents “informed at all reasonable times of the nature and progress of [the baby’s] condition and treatment”.

Te Whatu Ora has been approached for comment.

Judge’s ruling expected
The ruling should not have come as a surprise, University of Otago bioethics lecturer  Josephine Johnstone told Morning Report on Thursday.

“This may seem like a very 2022 case and it is in many ways, but it connects to lines of decision over time where there have been disputes about what’s in the best interests of a child that has very serious medical needs,” she said.

“So this is consistent with previous cases around the refusal of blood products for children whose parents are Jehovah’s Witnesses… or refusal of medical care for cancer treatment for children whose parents have alternative health and science[ views, which is sort of similar to this. In many ways it’s consistent with those decisions. It’s not really a break in that way.”

Johnstone said the parents’ authority over their child’s health and upbringing was being limited in only a very minor way.

“The parents still have all of the other decision-making authority that parents have. And parents do have enormous latitude to make decisions about how to raise their children — what religion to raise them, what kinds of beliefs, what kinds of home to create, what kind of traditions, they have enormous decision-making power about children’s [medical treatment], but it’s not unlimited.

“In very rare cases where it’s a life-and-death situation, we can expect the courts to step in — and that’s exactly what happened.”

Johnstone’s view was backed up by Rebecca Keenan, a former nurse who now works as a barrister, specialising in medical law.

Put child ‘firmly first’
“[The court has] put the child firmly first and have gone by the evidence and supported the health board,” she told Morning Report.

“From reading the judgment, you can see that the parents have been taking their baby out of hospital, against medical opinion, and there’s obviously been a real breakdown in the relationship between the parents and the medical staff.”

Wednesday’s judgment outlined a meeting in late November during which the parents’ support person “proceeded to pressurise the specialists with her theory about conspiracies in New Zealand and even said that deaths in infants getting transfusions were occurring in Starship Hospital”.

Johnstone said while having a support person in meetings with medical staff was a right, it was clear in this case they were not helpful.

“One has to imagine that the involvement of some of the anti-vaccine campaigners has escalated not just this case at the national level, but even the discussions between the family and their medical team, so that’s explicitly mentioned in the case and is definitely a factor in how things must have got to the point where a court order would be needed.”

While not an unexpected ruling, Johnstone fears it might further strain the relationship between parents with alternative views on medical matters and their doctors.

“Any family who has these views and has a very sick child, their healthcare providers are going to have to work that much harder to keep them engaged and keep their trust … a big challenge,” she said.

Pleased over care
Speaking to RNZ’s First Up earlier on Thursday morning, Deputy Prime Minister Grant Robertson said he was “pleased” Baby W would soon be getting the care he needs.

“Nobody underestimates the emotion and the challenge and the difficulty here, but we have to do what’s right for the child.”

The case has made headlines globally, with coverage on BBC News, CNN and The Guardian.

This article is republished under a community partnership agreement with RNZ.