Unjust system condemned these tiny warriors

An angelic-faced two-year-old toddler drew his last breath at 2am on Friday. Alfie Evans fought to survive for four days shocking doctors at Liverpool’s Alder Hey children’s hospital who believed he would die once his life support was turned off.

The boy diagnosed with a rare brain disease is not only mourned by Thomas and Kate, his heart-broken parents but also hundreds of thousands of Britons calling themselves Alfie’s Army who battled to free the boy from the iron clutches of the National Health Service with protests, petitions and social media posts. Appeals by Pope Francis and the Italian government which swiftly issued an Italian passport in Alfie’s name and dispatched a military helicopter to transport him to the Bambino Gesu Paediatric Hospital in Rome fell on deaf ears.

His doctor refused to permit the child to leave Alder Hey in the name of Alfie’s welfare, which sounds like utter nonsense given that after his life-saving machine was switched off he was left without food or water for two days—a slow euthanising process. How could a 2 hour 30 minutes-long flight to a reputable Italian medical facility linked to the Vatican possibly be classed as a worse option than a death sentence? His parents saw recognition in their child’s eyes and responses to their cuddles. They wanted to give him a chance, no matter how slim, which the Italian hospital offered free of cost. Surely it should be up to responsible parents to demand a second opinion, or even a third or a fourth.

Dying in dignity

Not so in the UK. Thomas and Kate were vilified by judges as attention-seekers. Beaten into submission by a last-ditch attempt at the High Court, they gave up the fight on Thursday. They thanked their supporters while asking Alfie’s Army to stand down. The final insult was the hospital’s refusal to allow them to take their son home to die in dignity.

Alfie’s mum and dad aren’t the only ones who’ve been dragged through the same heartbreaking mill. The parents of Charlie Gard, an 11-month-old baby suffering from a rare genetic condition called TK2 deficiency fought a prolonged legal battle to get their son released from Great Ormond Street Hospital where doctors insisted his prognosis was poor.

This case attracted a global spotlight last year and the family succeeded in raising £1.3 million (Dh6.6 million) to take him to the US where a hospital offered to treat him with pioneering non-invasive nucleoside bypass therapy. Instead, the infant was held prisoner and died when his ventilator was switched off. His parents’ pleas to spend a week with their baby in a hospice before the deed was done went unheeded.

The one good outcome was the case of Ashya King, a five-year-old boy with a brain tumour, no thanks to yet another NHS hospital Southampton General. Dissatisfied with the treatment their son was receiving, Brett King and his wife Naghemah planned to fly him to a country where proton beam therapy was used to treat types of cancer.

The hospital not only refused their request they were threatened with an emergency protection order barring them from seeing their child. The despairing couple promptly removed him from the hospital against doctors’ advice.

His doctors were not to be thwarted. Ashya King’s parents’ were reported to the Hampshire police, which led to a Europe-wide arrest warrant being issued. They were tracked down in Malaga, Spain and arrested, their children temporarily taken into care. Former British prime minister David Cameron called for a common-sense approach following a public outcry and they were released. Ultimately a judge permitted the family to travel to a world-renowned hospital in Prague to undergo the groundbreaking therapy.

Now nine-years-old, Ashya attends school, rides his bike and is full of life. Naghemah King says she and her husband have been vindicated. We will never know now if the parents of poor Alfie could have said the same. Internationally Britain and its national health system have been cast in a bad light. Alfie’s detention was a cause celebre in Italy, Poland and America. US Senator Ted Cruz put it in a nutshell: “The United Kingdom is refusing to let [Alfie’s] parents try to save their son’s life. They are saying ‘No, he must die’ and we are going to stop you from trying to save your son’s life.”

Once the medical profession has banded together, British judges invariably rule in the favour of doctors. The courts are obliged to make decisions based on the best interests of the child as defined by the Children Act 1989 that allows a public body to override parental choices subject to judicial approval. This law was drawn up to prevent children from being neglected or abused but in so many tragic cases, they law itself is abusive to parents and children alike. A law that tortures decent men and women such as the parents of Alfie Evans and Charlie Gard who fought tooth and nail to keep their young sons alive is abhorrent and should be amended.

Linda S. Heard is an award-winning British specialist writer on Middle East affairs. She welcomes feedback and can be contacted by email at heardonthegrapevines@yahoo.co.uk.

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