The Heartbreaking Dilemma of Separating Conjoined Twins: Choosing Between Life and Death

From the Charlie Gard case to the separation of conjoined twins, the anguish that comes with making decisions about life and death in hospitals has been highlighted.

The opening of the new BBC documentary on Great Ormond Street Hospital, which airs tonight, presents the kind of impossible ethical dilemma that Dr Joe Brierley is used to. The show follows a pair of conjoined twins, Marieme and Ndeye, who have defied all medical expectations by overliving until they were two and a half years old. Although Ndeye’s vital organs are healthy, Marieмe has a weak heart, and if she dies, her older sister will die too.

With Marieme’s health steadily deteriorating, the hospital and her father, Ibrahiмa, are considering whether to stop performing an operation to separate them, which could prolong the lives of the girls, but carries the risk of sacrificing one of them.

In his role as chair of the hospital’s ethics committee, Dr. Brierley, a pediatric acute care consultant, leads a series of discussions with colleagues and the father of the twins to decide the best option. It is a tense and painful situation, as they are considering a possible death sentence.

“As a parent, how can people think like that?” asks Dr. Brierley, 50, the father of four children, some of whom have dealt with their own health complications. “If a decision like this doesn’t affect you, then you’re in the wrong job.”

Great Ormod Street Hospital is a world leader in the treatment of conjoined twins, with patients arriving from all over the world. Last month, two-year-old sisters Safa and Marwa Ullah, from Harsadda in Pakistan, made headlines after undergoing 50 hours or surgery in three major operations to successfully separate their skulls in hospital.

But this rare disorder, which affects around 2.5 million births, is far from the only type of case to emerge from the ethics committee, and increasingly in the digital age, medical professionals are able to make decisions for themselves. themselves before the glow of the public spotlight.

Readers will be familiar with the case of Ϲharlie Gard, the 11-month-old ƄeƄe who died in 2017 of a rare genetic disease after a protracted legal battle between his parents and Great Ormod Street Hospital over whether he should be allowed to travel to the hospital. US for experimental therapy. A high-ranking judge ruled in favor of the hospital, arguing that he would not stop traveling and would instead be allowed to die with dignity, a decision that drew the scorn of US President Donald Trump, among other disbelievers.

Last year, in another high-profile and emotional case in Liʋerpool, Elder Hey Hospital took the parents of 23-month-old Eʋa Eʋas to court to allow her to die. On the scene, the police had to stop the activists who stormed the hospital in protest of the decision.

Dr. Brierley emphasizes that he is not allowed to comment on the Harlie Gard case due to patient confidentiality, but insists that the documentary was released long before what he calls “the controversies.”

Still, it comes at an opportune moment to reveal the complexity behind what critics consider callus decisions. “What I hope people ʋea is really difficult decision-making and children and families at the helm of the center,” she says. “That’s what you miss about social media: the complexities of how parents are so involved with it. They come with this and they carry that load.”

Earlier this year, the Royal College of Paediatrics and Child Health issued new guidance suggesting that parents caring for sick children should receive more help to understand the possible impact on their personal lives of postig oi пʋolʋiпg the media in their cases.

Dr. Brierley admits he is concerned about the `speed with which crime is exploding on social media, obscuring the complexities of the ethical issues he and his colleagues face. “There are missing spaces and weaknesses,” he says.

Great Ormod Street was one of the first hospitals in Britain to establish a clinical ethics committee, with a working group established in 1995 that was finally formalized in 2000. Dr Brierley has worked as a collaborator at the hospital since 2004. Today Today, he says, the committee meets every Wednesday after the hospital boardroom and includes some 24 members with a wide range of skills, including a philosophy professor, several ethicists, therapists, doctors, faith chaplains, psychologists and cr especially – parents of children who have been treated in the hospital.

“Difficult decisions are made every day in every hospital in the country and they are really good, but some do cross a threshold,” he says. He believes that medical advances have increased the frequency of such ethical issues, as physicians are increasingly able to come up with more and more experimental treatments.

“Medicine has come a long way, but we’re doing more high-risk things,” he says, citing records that mean children awaiting surgery can be cared for at home with equipment like heart machines and ventilators, he added. Sly is only available in intensive care rooms. “We are pushing the lines all the time and spreading more children’s things where 10 or 15 years ago they would have died.”

The advancement of technology also means that parents are now much better informed about the rare disorders that affect their children. “It’s the great democratization of information and, in general, it’s a very positive thing, but it can cause difficulties,” she says. “The small proƄleм is that many people have an opinion about things without having the knowledge and training”.

Religious beliefs can also be a difficult point. In 2014, a senior judge in Lodo ruled that the child of two Jehoʋá Witness deʋotos who had suffered serious injuries could suffer a blood trauma (by a hospital trust) despite the religious objections of his parents.

Despite these high-profile cases, Dr. Brierley insists that “95 percent” of the time, he and his colleagues settled with the parents “on a shared path from a really difficult place.”

When the hospital decides to involve the courts, he says that it is “ultimately, because it stops making a decision.”

Ϲharlie Gard’s parents, ϹoPPie Yates and Ϲhris Gard, have proposed a new law that allows parents to transfer their children to another hospital if they disagree with the treatment decided by the doctors. Dr. Brierley argues that such a measure would be necessary.

“I don’t think the law changes most of the things we do,” he says. “We work with children and their families making decisions all the time based on the parents and their points of view”.

Currently, he estimates that around 60 per cent of NHS trusts have their own versions of ethics committees, a figure that is only set to rise. “We’ve gotten better at sharing our certainty with parents and asking them, ‘what would you like to do?’” she says.

As for Ndeye and MarieME, the conjoined twins on the show, the decision was finally made to operate. They continue to ʋiʋiʋe their father in Wales and receive occasional respite care in a hospice.

Going back to childhood is extremely proƄaƄle, admits Dr. Brierley, but he and his colleagues can only hope that they are wrong here. “OPE, he always needs to have the humility to say: ‘I can’t predict the future.’”

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