The final days of 12-year-old Archie Battersbee are following a grim pattern we have seen many times before. Remember Charlie Gard and Alfie Evans? Chronically sick children whose parents refused to accept their babies would die, who took to social media conducting impassioned campaigns accusing the NHS of not trying hard enough. These parents gave daily press conferences and online updates, taking their battle through the courts in a futile attempt to gain control of their children’s lives.
The strength of their love and commitment is heart -breaking. Archie’s distraught parents have fought so hard to try to remove their brain-damaged son from the London hospital bed where he is being kept alive on a ventilator.
On social media their supporters claim that ‘more should be done’. That the NHS is failing a sick child, adding that foreign doctors might be able to bring about a change in Archie’s condition if he was taken abroad. Underlying everything is a dispute about how and when a sick child’s life should end. Poor Archie lies at the centre of it all, unconscious.
This phoney war around the final days of a sick child involves unscrupulous doctors seeking publicity for unproven cures and politicians like Donald Trump (who blabbed a vague offer of help for Charlie Gard) using a sick child for political gain. The Catholic Church can usually be relied for an opinion – the Pope said he was 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 high profile case they might fund for the coverage.
In the midst of all this, who benefits? The legal profession will be claiming far fees, fighting for distraught parents who refuse to accept that their child will die because there is no other option.
Now, a hospital ward has stopped being a place of healing and become a battleground. Doctors, nurses, and support staff find themselves pitted against angry and combative parents who believe they know best, who will use social media to fan support for their cause, and who will go to every court in the land- and eventually Europe- to try and take over the fate of their child.
Archie’s distraught parents have fought so hard to try to remove their brain-damaged son from the London hospital bed where he is being kept alive on a vent. Pictured: Archie Battersbee
In this situation, who is the winner?
Where’s the dignity in death when grieving parents call press conferences outside hospitals and claim their child is not receiving proper care, that he would be better treated elsewhere, even taken thousands of miles to Japan or Turkey?
In disputes like these, judges are being asked to rule on what is the ‘best’ outcome for a terminally ill child, and if that ruling doesn’t align with what parents are seeking, the process will be repeated all over again at vast expense until every option has been exhausted.
The European Court of Human Rights have said they will not overrule the original High Court decision- and so Archie’s life will end shortly after his ventilator is turned off. That could be as early as today.
Archie’s mother has gone back into to court to ask for her son to be removed from the London hospital where he lies, a beautiful boy who cannot see, hear, or speak, or use any muscles at all- and taken to a hospice where (she says) he will ‘die with dignity’.
She says that when his ventilator stops, she will give mouth to mouth resuscitation to try and prolong his life.
Pictured: File photo of Charlie Gard who died aged 11 months and 24 days in July 2017
Pictured: Alfie Evans who was also at the centre of a legal battle and died in 2018 aged one
Heartbreaking, but understandable. Every parent believes they know what’s best for their child. And when the medical profession say no more can be done to keep that child alive, a parent’s first reaction is of disbelief, followed by rage and sorrow in equal measures. They are ready to do anything.
Archie was found unconscious at home on April 7 –his mum thinks he was attempting a TikTok ‘blackout’ stunt that went horribly wrong- and has never regained consciousness. His parents think he shows signs of life and so there is grounds for hope. But any slight movement is involuntary, and doesn’t signify any improvement at all.
I know about that because my only nephew died after a seizure- he was on life support for weeks but never regained consciousness before he died. Sadly, hands and eyes moving are no sign of meaningful life.
The hospital has made it clear that Archie suffered irreversible brain damage at the time of the accident, and since then has been artificially kept alive. In the doctor’s eyes it is kinder to withdraw the life support and let him die with dignity.
According to Archie’s loving parents, he had ‘an infectious enthusiasm for life. Hard though it is, they must accept that it is more loving to let their son’s life end gracefully and quietly. To allow the doctors and the staff at his hospital to devote their precious time and resources to other sick children who need their skills just as urgently.
Twenty years ago, cases like these rarely made the news, because social media played no part in increasing our awareness. The Charlie Gard case saw the little boy’s parents post updates on Youtube, Instagram, Facebook and twitter, tagging followers #Charliesarmy.
Hollie Dance, mother of 12-year-old Archie Battersbee, with an unidentified man, speaks to the media outside the Royal London hospital in Whitechapel, east London, after the European Court of Human Rights refused an application to postpone the withdrawal of his life support
Charlie had been born with MMDS, an extremely rare genetic disorder which leads to progressive brain damage and muscle failure- there is no treatment and most babies diagnosed with the condition die soon after birth. A neurologist in New York was working on an experimental treatment, but did not come at the UK -even thought the NHS has said it would pay for the treatment, if it was thought it offered any hope of improvement.
As Charlie deteriorated, his parents raised £1.3 million to try and take him to New York for treatment. The courts stopped the baby being taken out of Great Ormond Street Hospital.
Sadly, Charlie experienced a series of seizures and by the time the expert finally arrived from the USA the following July, it was decided that there was no point in operating as the outcome would not undo the severe brain damage that had resulted.
Faced with the prospect of no further treatment for their terminally ill son, Charlie’s parents posted increasingly angry messages attacking doctors and staff at GOSH.
In the end, Charlie died in a hospice on July 28th, 2017.
Unless the medical profession, the government and the legal profession all work together, we will see more cases like Charlie, Alfie and Archie. Before relations between doctors and parents deteriorate to the point where both sides end up in court, there should be a form of arbitration, a neutral mediator who can win the trust of both sides.
Death is not what anyone wants in this situation.
But if a child’s death is unavoidable, let it be the best it can be.