The final days of 12-year-old Archie Battersbee are unfolding in a grim pattern we’ve seen many times before. Remember Charlie Gard and Alfie Evans? Children with chronic illnesses whose parents refuse to accept their children will die. These parents held daily press conferences and online updates, joining their battle through the courts in a futile attempt to gain control over their children’s lives.
The power of their love and commitment is the heart. Archie’s distraught parents struggled to get their brain-damaged son out of bed in London, where he was being kept on a ventilator.
On social media, their supporters claim that ‘more needs to be done’. That the NHS is saving a sick child, adding that foreign doctors could bring about a change in Archie’s condition if he is sent abroad. At the heart of everything is an argument about how and when a sick child’s life will end. Poor Archie lies at the center of it all, unconscious.
This haunting battle around the final days of a sick child involves unscrupulous doctors openly searching for unproven cures and politicians like Donald Trump (who made a vague offer of help to Charlie Gard) using a sick child for political gain. The Catholic Church can often be relied upon for opinion – the Pope said he is praying for Charlie – along with right-wing pro-life and anti-abortion groups. Not to mention opportunistic countries like Turkey and Japan, anxious to promote their latest medical facilities with a famous case they can fund coverage.
In the midst of all this, who benefits? The legal profession will demand far-reaching fees, fighting for distraught parents who refuse to accept that their child will die because there is no other choice.
Now, a hospital complex has ceased to be a place of treatment and has become a battlefield. Doctors, nurses and support staff find themselves pitted against angry and belligerent parents who believe they know best who will use social media to support their cause. them, and who will go to every court in the country – and eventually Europe – to try and take over the fate of their child.
Archie’s distraught parents fought hard to try to get their brain-damaged son out of a hospital bed in London, where he was being kept alive in a vent. Photo: Archie Battersbee
In this situation, who is the winner?
Where is the dignity of death when grieving parents call a press conference outside the hospital and declare that their child is not being cared for, that he will receive better treatment elsewhere, even take thousands of miles to Japan or Turkey?
In disputes like these, judges are required to rule on the ‘best’ outcome for a terminally ill child, and if that ruling doesn’t match what the parents are looking for , this process will be repeated again at great cost until all options have been exhausted.
The European Court of Human Rights has said it will not overturn the Supreme Court’s original ruling – and so Archie’s life will end soon after his ventilator is turned off. That could be as early as today.
Archie’s mother has returned to court to demand that her son be removed from the London hospital where he lies, a beautiful boy who cannot see, hear, speak or use any muscle – and taken to a hospital. hospice where (she said) he would ‘die with dignity’.
She said that when his ventilator stops breathing, she will use her mouth to resuscitate to try to prolong his life.
In the photo: Charlie Gard photo file passed away at the age of 11 months 24 days in July 2017
Pictured: Alfie Evans, who was also at the center of the legal battle and died in 2018 at the age of one
Heartbreaking, but understandable. Every parent believes they know what’s best for their child. And when the medical profession says nothing else can be done to keep that child alive, the parents’ first reaction is distrust, followed by anger and distress by equivalent measures. They are ready to do anything.
Archie was found unconscious at his home on April 7 – his mother claims he was trying to do a TikTok ‘blackout’ stunt that went horribly wrong- and yet never wake up. His parents thought he had signs of life and so had grounds for hope. But any small movement is involuntary and does not mean any improvement.
I know about it because my only grandson died from a seizure – he was on life support for weeks but never regained consciousness before he died. Sadly, hand and eye movements are not a sign of a meaningful life.
The hospital clarified that Archie had irreversible brain damage at the time of the accident, and since then, Archie has been artificially kept alive. In the doctor’s eyes, it was better to withdraw life support and let him die a decent death.
According to Archie’s loving parents, he had ‘an infectious enthusiasm for life. Although it is so difficult, they have to accept that for their son’s life to end more gently and smoothly. Allow the doctors and staff at his hospital to dedicate their precious time and resources to other sick children who need their skills urgently.
Twenty years ago, cases like this were rarely reported, because social media played no role in raising our awareness. The Charlie Gard case saw the boy’s parents post updates on Youtube, Instagram, Facebook and twitter, tagging followers #Charliesarmy.
Hollie Dance, mother of 12-year-old Archie Battersbee, to an unidentified man, speaks to the media outside the Royal London hospital in Whitechapel, east London, after the European Court of Human Rights from denied his application for a postponement of the withdrawal of his life. donate
Charlie was born with MMDS, an extremely rare genetic disorder that leads to brain damage and progressive muscle failure – there is no treatment and most babies diagnosed with the condition die soon after. at birth. A New York neurologist is working on an experimental treatment, but not coming to the UK – even if the NHS thinks it will pay for the treatment, if it thinks it gives any hope for any improvement.
When Charlie went bad, his parents raised £1.3 million to try to get him to New York for treatment. The court blocked the removal of the baby from Great Ormond Street Hospital.
Sadly, Charlie had been going through a series of seizures and by the time the last specialist from the US arrived in July of the following year, it was decided that there was no reason to have surgery as the results would not be possible. repair the severe brain damage caused.
Faced with the prospect of not being able to further treat their terminally ill son, Charlie’s parents posted increasingly angry messages attacking doctors and staff at GOSH.
Finally, Charlie died in a hospice on July 28, 2017.
Unless the medical profession, government and the legal profession come together, we will see more cases like Charlie, Alfie and Archie. Before the relationship between the doctor and the parent deteriorates to the point that both parties have to go to court, a neutral form of arbitration and mediation is needed to gain the trust of both parties.
Death was not something anyone wanted in this situation.
But if the death of a child is inevitable, let it be the best it can be.