Home / Erasmus+ / Charlie Gard: The emotions and the agony of a little baby who moved an entire world
Photo Source: The Independent

Charlie Gard: The emotions and the agony of a little baby who moved an entire world

Never until now the destiny of a little child was more intensely followed and debated, neither in Great Britain, and maybe nor in the entire world, as was the one of Charlie Gard, who’s suffering was doubled by that of his parents who tried to keep him around as long as possible, despite the medical prognosis and court orders. This story created a wave of emotions and divided the public, which followed up with passion the story with a sad ending from the place of events or from online platforms.

A case intensely mediatized

The case of Charlie Gard became known in the last months of the last year, after his parents found out that he has an incurable illness only a few months after his birth. Refusing to accept the initial prognosis of the doctors, Chris Gard and Connie Yayes, Charlie’s parents, started a fierce battle in hope to safe the baby’s life. During the several months marked by lawsuits, hopes in experimental treatments, a fund-raising campaign for the payment of the treatment, which would develop in the creation of a foundation, but also marked by the intervention of the Vatican and also of the president of the USA Donald Trump, Charlie Gard was the headline of several media outlets. The 11 months of the suffering baby’s life brought emotions and compassion among those who followed the case, but also profound ethic debates about the right of the authorities to decide whether or not to keep alive those who are suffering, especially when they cannot communicate with the others.

The beginning of a life full of nightmares

Born on August 4, 2016, Charlie Gard was diagnosed with an incurable disease after being taken to the hospital because his parents noticed that he is losing weight and doesn’t have the typical for a new-born energy. The diagnosis: mitochondrial DNA deficient syndrome – an illness without treatment. The baby was hospitalized in Great Ormond Street hospital (GOSH), a renown medical institution, which would become the target of “dehumanization” accusation for the supporters of Charlie’s parents.

After it became clear that Charlie’s illness is extremely serious and that the battle to save him requires them being as close to him as possible, Chris and Connie moved to an apartment close to the hospital, which has been put at their disposal by an organization for people who are in a situation of extreme medical need. Because the situation became desperate in the meantime and the bad news started pouring in, the doctors told the young parents in November that Charlie’s illness will lead to all the internal organs to fail and that he has left to live “only a few days.”

Nonetheless Connie and Chris didn’t accept the sentence given by doctors and started looking for experimental treatment. Thus, Connie found the American doctor Michio Hirano, an excellent professor of neuroscience at the University of Columbia from New York, according to The Telegraph. He was developing a therapy for kids affected by a similar illness, but which wasn’t implying the same mitochondrial deficit. The hospital from English started exploring the possibility of putting the baby under experimental treatment, but in January, little Charlie suffered a series of spasms which lasted for 17 days and the experts from within GOSH concluded that the baby suffered irreversible and structural affections of the brain and nothing else can be done.

The legal battle

Thus, the legal battle started, because Chris and Connie went to court to convince it to not give to the doctors the right to disconnect Charlie from the medical devices that kept him alive. In front of the judge, the hurting mother said that disconnecting him from the devices “would mean to condemn Charlie to death.” One month later, the judge Justice Francis agreed with GOSH’s plea, which was asking that Charlie would be “left to die with dignity.” The judge should have taken decided upon the best outcome for the baby. He was not supposed to judge upon what his parents were thinking that is best for their child and Charlie was supposed to be the person benefiting from the law. The judge ruled that the devices keeping Charlie alive were to be stopped.

The decision of the preliminary court was not the end of the battle, because the baby’s parents continued to fight fiercely, obtaining the sympathy of many people. They gathered £ 1.3 million via a fundraising campaign in order to give Charlie the experimental treatment, but they also continued the legal fight, going to Court of Appeal, The Supreme Court of Great Britain, and then the European Court of Human Rights. They lost in court each time. As parents, Chris and Connie, as well as many of their supporters, thought that they were doing what’s best for their child. The GOSH doctors and eventually the courts decided otherwise.

The questions left unanswered after Charlie’s case

With the medialization of the case and the involvement of more and more actors into the battle which implied a lot of emotional involvement, also a lot of public debates about ethics have been started. Who can decide upon the fate of a minor – the parents or the authorities? To what extent can the doctors decide upon the decoupling a baby from the devices that keep him alive? On what grounds can a judge give a sentence in cases like this? And last but not least, how should emotions and compassion be managed in cases as such? In the last months, in Great Britain, besides Brexit, electoral campaign and UK’s position worldwide, it was discussed intensely also about these topics, due to the awareness little Charlie raised, with the help of the mass-media and social networks, through his short and painful life.

Rationality, feelings and ethics – justice to each side

In the British justice system, there aren’t many cases that drew as much attention to themselves as did the case of Charlie Gard. During court hearings, the representative of GOSH, lawyer Katie Gallop, said that the case is “sad,” but not “exceptional,” according to BBC. She was wrong though and the legal battle fought by Charlie’s parents was one of the cases which caused the questioning of the legal arguments based on our human nature. The emotions caused by this case were so strong that they provoked an official reaction from the Vatican, which pleaded so that the medical institution would let the parents to spend as much time with their baby as possible. Nor the US President, Donald Trump, could keep his distance from the case, so he Twitted a message to show his support and declared himself ready to help the Gard family “with anything they need.” Of course, not few were the voices that criticized those who picked this side, accusing them of using the case to benefit the image of the Catholic Church, and the White House respectively, both institutions having a bad image in the eyes of the British society.

Photo Source: www.bbc.co.uk
Photo Source: www.bbc.co.uk

The above questions persisted and provoked intense debates about how it got to this point and what do all these things say about the now-a-days society? Judging rationally, a few aspects can be extracted from the story marked by emotions. Firstly, the medical institution, Great Ormond Street Hospital, has been the target of a wave of charges and the staff of the hospital has been verbally assaulted and threatened. One of the causes is the fact that Charlie’s parents have received an overwhelming attention from the mass-media, while the hospital had to rely on press releases and official documents presented to the judges, a method of communication too rigid for a public that has sided with Charlie’s parents mostly because it felt empathy towards them. Rational logics, based on science, had no chance of winning the hearts and minds of those awe-struck by the emotions and effort that the parents were putting off in order to save their baby. Nonetheless, it has been put to question whether the medical world could have done more. Professor Uta Frith, expert in cognitive development at University College London, claims that medicine cannot fully be parted from its emotional context: “We can never be 100% sure when it comes to our theories and actions. Emotions, which are absolutely sure, win when put to comparison. Nevertheless, scientific judgement cannot fully be parted from emotions. Maybe this is an advantage which we should cultivate more. Well-argued facts need remarkable messengers which would engage in winning-over people’s hearts.”

The importance of Charlie Gard case is given by a dilemma with which the modern medicine is confronting with as it grows: when is the right moment to stop treating patients and leave the to die? In the case of adults, these debates are solved fast: organ donation, refusal to resuscitate, or euthanasia procedure with the patient’s consent. But how to solve these situations in the case of minors and even more importantly, in the case of babies who aren’t able to communicate yet? Are the doctors or the parents entitle to decide in the name of the one who is suffering?

Medicine is based on the principle of “not doing anything bad” and in this case the doctors decided that “there isn’t a quality of life and there are no prognoses of a quality of life.” But this assumption adds to the issue an ethical dimension: are the doctors those empowered to establish the standards of “quality of life?” Are we maybe giving too much credit to their opinion? Professor Julian Săvulescu, a well-known expert on ethics from Oxford, is trying to answer this question. The scientist with Romanian origins claims that Charlie’s parents should have been allowed to take the baby to the US at the beginning of the year, because they gathered the certain amount of money needed to pay the experimental treatment, which they required. Even if the chances were small, the treatment should have been given a chance, because the money were not paid by the insurance system, but from private funds. “The state would not have had to pay for the experimental treatment, which anyway had a small chance of success, because Charlie’s parents had the money. Charlie should have gone to the US immediately and thus hundreds of thousands of pounds coming from donations would have been saved, which anyway have been spent during the months of intensive care. This is not an argument based on religion or the right to life, neither an argument based on compassion. This is an secular and ethic argument about the extreme complexity of judging the fact that somebody’s life is not worth living,” stated the professor from Oxford.

The child rights before the parents’ rights

This statement brings us to the arguments based on which Charlie’s parents justified the legal battle: parents’ right to decide what’s best for their children. They claimed it’s their right to decide what’s best for the baby. Nonetheless, the British law claims otherwise: Child Law of 1989, which was passed after a child abuse scandal in Cleveland, states clearly that when a child is under the risk of suffering, the state can and has to intervene. In the meanwhile, the law has been fined several times, getting to the point when there was created a legal framework through which the authorities were being encouraged to provoke parents’ vision when they think that child’s interests are not being satisfied. Daniel Sokol, expert in medical ethics and pleading lawyer, claims that this case brought into attention this aspect: “We’ve been reminded that parents’ rights over their children are not absolute. They are limited to what represents children’s interests.”

The online world – emotional catalysator

Surely a big part of the pressure put so a decision would be taken and many of the feelings provoked by this case would not have been possible without the online world. A similar case would have had a smaller impact in the pre-internet world. But at the same time, with the help of the social-media, Charlie’s family succeeded to gather the money necessary they thought would save the child’s life and which will now be used in order to create a foundation fighting for the treatment of kids with similar illnesses as Charlie’s. Connie and Chris could communicate easier with the public and could share online a last film through which they were imploring GOSH to allow them to spend more time with their baby in order to say good-bye. And last, but not least, the Vatican’s and Donald Trump’s interventions were propagated via the digital mass-media and social-media. According to BBC, if this case has a specific legacy, then it is the fact that the role of the digital world should be taken into consideration firstly: “With the help of internet, especially with the help of the social-media, the family obtained an overwhelming attention, support from influential people and considerable sums of money. They could find doctors from all over the world who would support them,” said Daniel Sokol. In the future, writes BBC, in the context of cases as such, the opinion of the doctors will be doubted strongly and their rhetoric will have to change in order remain trustworthy to the society.

11 months, more than a human life

Friday, July 28, not much after 18:30, Charlie’s mom announced that “our splendid son died.” Some hours before, accompanied by a team of paramedics, the two parents accompanied Charlie to an asylum where he was released after leaving the hospital. At the end of the story of which they would not have liked to be part of, Connie and Chris were beside Charlie not to whisper to him good night, but to say farewell to the “sweet, amazing, and innocent baby.” At a predetermined hour, a pediatrician specialized in serious child illnesses, removed the tube through which Charlie was breathing. After a few minutes, he died. Charlie’s 11 months have finished, leaving behind two parents in pain, judges and doctors who were asking themselves how far can they go in taking decisions about the right to life or death, an impressive sum of money which will be used to create a foundation for children who suffer of similar illnesses, and last, but not least, a public opinion stronger than in similar cases, which has brought an emotional contribution to the entire case. “Charlie had a bigger impact and had touched more people in this world in his 11 months of life than other people in an entire life time. We could not be prouder and could not love our splendid son more. We are proud of you, Charlie,” said the suffering parents a few days ago. Charlie’s life has ended, but how much will the lives of the rest be changed after his death?

This article was published under the ”Education Through Information – Hunting the Truth” Erasmus+ Youth Mobility financed by European Commission

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