Posts Tagged ‘charlie gard’



May 17, 2018

On St Georges day the UK celebrated the birth of a new royal baby, while in a court in Liverpool it was made clear to Tom Evans and Kate James, a young working class catholic couple with an extremely ill baby, that they had no rights to take their child to a state of the art hospital in Rome, despite it being arranged by the pope and despite the judge admitting that under EU law the parent’s did have a right to do so; EU law that was then overruled by the British Judge in question.
It is my understanding that family courts can only overrule parents if there is a risk of “significant harm” to the child. Harm was not an issue in this instance, which brings into question whether or not the Judge was acting beyond his remit?

After the court concluding that it was in Alfie’s best interests to die at Alder Hey; little Alfie Evan’s ventilation, life support and sustenance was removed despite no diagnosis of his illness having yet been made. A state embargo prevented the media releasing any information on Alfie’s condition until the following morning by which time Alfie was expected to have died.
Alfie’s father Tom Evans then surprised everyone when he excitedly revealed at the morning press conference, that his son had not died in the minutes predicted but was breathing on his own, which a brain dead child could not do.

The Irony and double standards in cases such as Alfie Evans fills me with sadness, as the liberal elite decide to pull the plug on the last hope and the last breath of someone else’s child. Since when did establishment decide that they own our children and feel justified in preventing responsible parents from moving their child to another hospital that they feel offers them hope? Why would any parent be prevented from doing this?

Our courts too often condemn the terminally ill to live when they’re begging to die a dignified death, yet condemn a child to death whose parents are dying for him to live?
You can bet your life if the doctor or judge concerned had a child with similar problems that no one would stop them from taking their child to whatever hospital or country they chose.

Patronising parents as being well meaning but lacking the understanding to judge the complexities involved, is to grossly underestimate the intelligence of parents and their ability to grasp every piece of knowledge available when fighting for the life of their child.
Tell me this; who but a parent has the love, the hope, the belief and the moral right to decide what is best for their child in this situation? Are parents no longer allowed to disagree with doctors on life and death decisions or to seek treatment abroad?

Alder Hey hospital has every right to refuse to continue to treat any child in their care but surely overstepped the mark when they decided to take the parent’s to court to prevent them from seeking treatment, care or a diagnosis for their child from medical professionals abroad.

Alfie’s parents managed the near impossible. Not only did they raise the money needed to arrange for a hospital in Italy to take over Alfie’s care but they had a chartered plane complete with medics waiting to take Alfie there. To have managed to do all this only to be prevented by the hospital, the courts and the British police from removing their son from Alder Hey is tragic.
After Alfie’s life support was removed, Tom Evans desperately appealed for help, saying that for over 21 hours his son had not received any food, water or the oxygen needed to compensate for the sudden removal of Alfie’s year long life support.
Sustenance was eventually provided.
Confounding all expectations Alfie breathed on his own for over one hundred and one hours, until he sadly died at 2.30 am on Saturday 28th April, in a hospital his parents had been in a bitter dispute with. However it is not known whether shortly before Alfie’s death, a cocktail of drugs including Fentanyl which can apparently result in respiratory depression and even death, was administered in line with the hospital’s end of life plan; a plan the parents fiercely opposed.

Sadly this was a power struggle and Alfie was effectively a prisoner of the state. A state that appeared to fear the lesser educated parents might win, particularly as against all the odds Alfie’s ordinary, extraordinary parents had managed by themselves to make their son’s case global.
I am pro NHS. This was not about the staff on the ground; it was about the hierarchy making the decisions. Doctors warned that the parents could pose a flight risk; a term normally reserved for fugitives or criminals of which Alfie’s parents were neither.
Yet armed officers were deployed to guard the court while police officers lined up en masse outside Alder Hey hospital, appearing for all the world like a scene from ‘1984.’

According to a press photographer in the crowd, the vast majority of supporters and protestors gathered outside the hospital were mothers and children. The nurses and the police officers were of course, simply following orders.

It is tragic that even after Alfie’s dad bowed to the will of establishment, with the sea change of attitude the doctors demanded before they would even consider releasing his son from their hold; that a subdued Tom Evans, seemingly beaten into submission, praised to the hilt the hospital he opposed, in a desperate bid to get his son home.
In the end Alder Hey hospital did not bend, as suggested by the judge that they might. Had they done so, Alfie who had been denied the right to seek care abroad, would at least have been able to die in the warmth of his home with the parents who loved him, rather than in a clinical hospital room guarded by multiple police officers preventing his removal.

What are establishment afraid of? Surely it makes sense to vacate a bed for a child that desires and requires it, whilst allowing the parents of Alfie to be given a final opportunity to try and save the son they loved.
Doctors are not infallible as was proved in the case of Ashya King whose parents were arrested at the behest of another British hospital when they sought treatment abroad that ultimately proved successful. Turning loving parents into criminals because they dare to question autocracy is a tad too close to a reflection of ‘the handmaiden’s tale’ and will further polarise an already polarised society.

It is true that Alfie’s parents received several other medical opinions with the co-operation of Alder Hey hospital and that those doctors agreed that Alfie had suffered significant brain damage. The Bambino Gesu hospital in Italy was not offering a cure; they were offering ventilation via a tracheotomy which Professor Stephen Hawking and the actor Christopher Reeves both benefited from. The parents were also hoping for a diagnosis of Alfie’s undiagnosed condition.
The court and Alder Hey believed that Alfie was unable to see, hear or feel, however Dr Izabela Pałgan, a paediatrician and oncologist from Poland who diagnosed Alfie on his parent’s request, stated that Alfie was not a dying child and did respond to external stimuli. “He opens his eyes, sucks on his dummy, responds to his parent’s voices and to being tickled”. “This is not a case of brain death said Dr. Palgan”. “If the parents want to move the child to another hospital, they have the right to choose a doctor, the right to choose where the child will be treated, and no one should deny them that right.”

Whatever the prognosis miracles can and do happen and the power of love is an awesome force; Noah Wall “The boy with no brain” being just one example. In Noah’s case the brain apparently regenerated, confounding the doctors involved who admitted how little the medical profession actually know about the brain.

The judge was obviously not made aware of this case when he confidently stated that the brain could not regenerate.

When trust between the medics and parents had broken down to such an extent that Alder Hey hospital removed the sofa that Alfie’s parents had slept on for over a year, forcing them to sleep on the floor, and decided that death was in Alfie’s best interests; it was logical for Alfie’s parents to seek alternative care for their child.
Denying parents such basic rights leads us down a slippery slope that will divide our country further.
A hospital deciding to end treatment is one thing but to then deny parents the right to transfer their child’s care to another hospital is quite another. Going to war with parents is not the answer and is highly likely to create insurmountable problems in the future.
Parents will fight to the death for their children and this fact of life should never be underestimated.
A law in favour of parents is now urgently required. Our children are after all, not yet owned by the State… or are they?

Janis Sharp Author of ‘Saving Gary McKinnon’ Biteback publishing.

NB: Alfie Evans was laid to rest by his parents at a private funeral held on Monday 14th May 2018.