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In Defence of Baby Charlie Gard – The Right to Fight for Life!

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As anyone who knows me well will attest, I love to write about things, issues, causes and virtually anything that grips my heart in a powerful way. Writing for me is cathartic, healing, meditative and provides some outlet to right wrongs that are simply beyond my power to put right except for the conviction of my thoughts and opinions as I express them with every stroke on my keyboard or phone’s pad, or with every imprint of the flourish of my pen on a notepad.

Unfortunately, life tends to get in the way and I often struggle to find the time to write at the pace with which news events grab the headlines. In recent weeks, the UK has suffered a spate of tragic incidents which have occupied the news on an almost daily basis. Namely, the Manchester bombings, the London stabbings and of course the awfully sad and tragic Grenfell Tower mishap. Without a doubt it’s been a hellish period for the UK lately; added to it the uncertainty of Brexit negotiations which I did and still do support with every fibre of my being because I firmly believe that after the rain comes shine even in the political and economical sense. Of course the further instability caused by an ill-conceived election a few weeks ago can’t have helped either. Theresa May should learn from this: that even 24 hours is a pretty long time in politics and never ever to underestimate an opponent. Even a seemingly puny one!

Back to my main reason for writing this piece; there’s been much in the news lately about the case of baby Charlie Gard whose parents are currently engaged in a court battle to allow their son to be kept on life support so that he can be taken to the US to receive further treatment for a very rare and terminal condition he suffers from. I am mystified at why in these circumstances, the courts instead of the parents should be the ones with the jurisdiction to determine what is in the best interest of the child. However much quality of life might be considered diminished for baby Charlie, this is not his parents doing; nor is quality of life to be measured purely by circumstances of the health restrictions under which his condition keeps him trapped.

expectancy as a result. The young, old, impoverished, disabled and infirm. Some virtually destitute; without shelter, clothing, food, family or even worse. Do we then say that because we ‘objectively’ determine that they have little or no quality of life we should be allowed to also determine the extent to which they are entitled their hope for a better life, even if the chances of a better life are bleak or non-existent? Do we then determine that perhaps it is better to end their right to life by offering them the chance to die with ‘dignity’ (perhaps we ‘dignifiedly’ withdraw the supply of air and food) because in our esteemed positions we deem that with their hardship and suffering they have such a poor quality of life that it is better for them to die? Who determines what is sufficient or insufficient quality of life and why in the case of baby Charlie does that determination have to be made by the courts when his parents have not given up hope for him. Whatever happened to the adage ‘where there is hope there is a way’?

Quality of life is also measured by the depths and lengths to which baby Charlie’s parents have gone and are prepared to go to in order to ensure that their son is surrounded with every love, care and attention possible. The endless days and nights his parents will have spent by his side in hospital, the relentless fight for their child, the campaign and fund-raising etc. These are all actions of parents who by their commitment, prove that their son’s life is indeed worth everything. This being the case, one could argue that baby Charlie does have at least some quality of life as demonstrated by the depth of his parent’s love for him and the fact that his parents are prepared to go to extraordinary lengths to keep him alive when there are some who live with no one to care whether they live or die.

Anyone can see that the motivation behind baby Charlie’s parents campaign to keep him on life support until further treatment is sought is borne only out of the most selfless example of love there is. This is the kind of love that does whatever is necessary to move impossible mountains. There can be no law to restrict that kind of love. There should be no jurisdiction superimposed over this kind of love. Where there is a perfect love there can be no containment of its force and its life-giving essence. Love is a harbinger of hope; even the kind of hope that can appear very much at odds with natural possibilities, medical prognoses or hoity-toity, hoi-polloi legal opinions. I would say that if all else fails, at least let love prevail. This kind of love cannot be rationalized nor can it be subject to the judgements and rulings of an austere legal system or limited by intellectual validations that however convincingly presented they might be or might sound, such grandiose arguments cannot be sounder than the purity and the simplicity of love’s own intrinsic truths – that love does conquer all.

I think that the hospital authorities and legal parties concerned should all work together to support baby Charlie’s parents in their wish and desire to give their son every possible opportunity at life in whatever shape or form it can be preserved. I have every respect for Great Ormond Street Children’s Hospital and am fully appreciative of their standards of excellent care and concern. Very many years ago, I had cause to be humbly grateful to the Great Ormond Street staff when my 6 year old son at the time; now 22 yrs, was rushed in an ambulance from the Royal Free Hospital in Hampsead to Great Ormond Street Children’s Hospital. This was following complications he had suffered from inexplicable stomach complaints for which he had been kept a whole week on morphine pain relief at the Royal Free.

The transfer to Great Ormond street was as a result of the escalation of his pain. By this time the morphine was not proving very effective at containing and due to his age, he couldn’t have a higher dose administered. His shrill and piercing cries of pain had become continuous and there was nothing anyone at the time knew what to do. I remember the terror that gripped me from imagining the very worst. I also remember the warmth and the care that Great Ormond street provided us for the one week duration that we were kept in. The Great Ormond Street staff were a godsend at the time and at a time when it was impossible as a worried mother to be put at ease with the burden of worrying about a very ill child in agony, the Great Ormond street staff did exactly that.

Suffice to say that after a whole week at the hospital during which a whole battery of tests were run, the cause of pain was discovered and thankfully, though it had been potentially serious, it was not as serious as it could have been. Long story short, my son underwent a simple procedure and that was problem solved! We left Great Ormond Street Hospital without a further care in the world and I remember hugging with such smothering gratitude and relief, all the professionals who’d attended to us the whole week. I continue to have an extremely soft spot for Great Ormond Street Hospital and it remains one of my favourite charities that I support. So, this is certainly not an attack on the medical wisdom or opinions of the Great Ormond street experts but I think that their role in the case of baby Charlie should be to simply provide the parents with every support they need instead of obstructing the parent’s wish to take their son abroad for further treatment, however slim those chances may be.

I surprise myself but for once, I totally applaud President’s Trump for wading in on this matter to offer assistance with whatever is needed to help baby Charlie and his parents. I think everyone concerned with baby Charlie’s plight should do the same instead of placing legal impediments in the way; however well intended these may be. Love for a child cannot be legislated. Of all the imperfect things that we observe and face daily in life including our very own imperfect selves, the only thing we can acknowledge as being truly perfect (or near so) is love; particularly parental love. The kind of love that sacrifices everything possible to save a child, a precious one or a cherished hope.

For this kind of love there can be no law surely? Of what use is law in the face of perfection; for there can be nothing more perfect than the determined and selfless love that continues to prompt baby Charlie’s parents in their fight for life and justice for their seriously ill son. So, I find it hard to understand how judges and courts can prove that they are better placed to determine the best interests of baby Charlie than his own parents who unarguably have their son’s best interests at heart.

Finally, it is indeed interesting but also ironic to note that in a society as increasingly permissive as ours, we don’t experience court battles being waged to save the lives of countless unborn children aborted by parents who for one reason or other (justifiable or otherwise) deem it necessary to make that choice. In these cases, the simple fact of CHOICE is seen as an unquestionable right and entitlement to be exercised by the parent in question, even if the choice is to terminate the life of an innocent unborn. It would seem that the right to kill (and there is no other way to put it than the way it is), is considered morally superior to the inalienable right of loving parents such as baby Charlie’s, to determine the right to CHOOSE life for their child, however fragile and tenuous that life may prove to be.

Why this case should have gone to court in the first place is beyond me. We have millions of abortions each year and no one bats an eyelid. We have one truly heart-rendering case in this instance of parents trying to do everything in their power to preserve the life of their child and we see the full weight of the legislature, deployed in defence of the indefensible; all in the name of trying to ‘preserve the dignity’ of baby Charlie! Really? As opposed to what? As opposed to the fact that his parents do not wish the same dignity of life for their son I suppose? This is the kind of dispassionate reasoning that is so out of place for an emotive case like baby Charlie’s. It is an extremely emotive situation and there should be no attempt to de-emotionalize it with legal and medical depositions or mumbo-jumbo.

Baby Charlie’s parent also deserve some dignity of consideration for all they’ve suffered and continue to suffer during this harrowing period. Let real sanity be allowed to prevail. Let the legal hounds back off and let baby Charlie’s parents be allowed to take their son to the US or the ends of the earth if need be or if there is the slightest glimmer of hope that his situation can be improved. I am a firm believer in miracles even when they have not happened as I hoped. I continue to believe in them. I’ve seen enough in my life to cement my faith in the absolutely impossible. In a world riddled with the disease of chronic cynicism which only serves to dampen human hope, spirit and enthusiasm, I prefer to cast my vote for anyone who chooses to believe in miracles like I do. If at the end, it all fails for baby Charlie, at least we will be comforted in knowing that everything was done to save him or to give the hope for a miracle some chance; because I tell you, miracles happen all the time. Life is a miracle, birth is a miracle; even death as morbid a subject as it is, is a miracle. So, whether miracles happen the way you want them to or not, they do happen and they will continue to happen.

But if you don’t believe in miracles, at least give those who believe in them (i.e baby Charlie’s parents), a fighting chance to get the miracle they hope and believe for. It can only be the depth of their love for their son that prompts them to hope against hope. Surely, that has to be a more humane, a kinder and more plausible position than one which grants judges who go home each night, spared from the burden of loving and caring for defenceless baby Charlie, the right to determine (instead of his own parents), when to terminate the life of defenceless baby Charlie. A seriously ill baby whose only hope is the love that prompts his parents to fight for the seemingly impossible. What sort of asinine legal ruling is that and what sort of civilized society so-called, denies the parents of such a child that basic right and comfort?

It might be legal but whatever it is, it is certainly not moral, ethical or right. For me I find it heart-breakingly unfair. That’s why I write.

Kobi Emmanuella-King

 

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    Kobi Emmanuella - King (kobiemmanuellaking) | Pearltrees
    November 23, 2017 at 9:38 am

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