The case of Alfie Evans is desperately sad. Here is a 23-month-old child who had every appearance of being a healthy baby boy before a progressive neurodegenerative disorder left him in a semi-vegetative state. Alfie has been reliant on mechanical ventilation since December 2016. I have been following the case closely, and in many ways, it is too close for comfort.
As an intensive care doctor, I know how difficult and heartbreaking Alfie’s case will have been for the medical team treating him. It would be wrong of me to comment on the specifics of his case, but what I can tell you is that the nurses who have helped bathe him, feed him and clothe him every day will feel the pain of Alfie’s plight acutely.
The doctors looking after him will have agonised over the decision to withdraw life-sustaining treatment. It will have kept them up at night, and they will have drawn on all their expertise and experience to offer Alfie any hope of recovery he has. Now they will do what they feel is best for Alfie, to keep him comfortable and allow him to die with dignity. Alfie’s case will never leave them; they will grieve in their own way, and carry the weight of their decisions for years.
But here’s the thing: I am also a mother, a mother whose baby was critically ill and spent months in intensive care. It is all too easy to weigh in on these sorts of issues from the sidelines; we all think we know how we might react in the same situation. But the truth is that until you are faced with of the possibility of losing your child, you simply can’t know.
The day my son Joshua suffered a massive pulmonary haemorrhage and had to be resuscitated, I lost all perspective. It was a miracle he survived, after weeks of ventilation, in no small part down to the skill of the medical team.
Alfie’s parents have filed numerous legal challenges against the High Court ruling in February that doctors can act in Alfie’s best interest and withdraw life-sustaining treatment. They have been berated for doing so, but they are only doing what any parent would: fighting tooth and nail on behalf of their son.
Thinking clearly and logically when your child’s life hangs in the balance is beyond the bounds of possibility. As a doctor, perhaps I knew deep down how sick my baby really was, but as a mother, I clung desperately onto every word that offered Joshua any hope of survival. The innate drive to save your child, at any cost, is overwhelming. A love that like that can never be rationalised; how can anyone criticise Alfie’s parents for being unable to accept that he will die?
Accordingly, I am indescribably angry at those who prey on parents at their most vulnerable, offering them hope where tragically there is none. Religious leaders advancing their own agenda; celebrities and politicians wading in to intervene while serving only themselves; even – and I’m ashamed to admit it – members of my own profession, in the case of Charlie Gard, offering treatment without evidence. How dare they capitalise on a family’s grief in this way? It is abhorrent and it is cruel.
Perhaps worse still are the deplorable actions of those that claim to support Alfie. Just two days ago, members of “Alfie’s Army” stormed the doors of Alder Hey, a hospital full of sick children who are already frightened. A terrified parent begged on Facebook for Alfie’s Army to reconsider their plans to set off the fire alarms at Alder Hey, as her own child was on the operating table and “deserved a chance too”.
Alfie’s condition and his prognosis have been grossly misrepresented, and many are seemingly baying for blood. Doctors have been personally named on social media and accused of murder. Others have received death threats. One of my colleagues said she was too scared to go into work. The tabloid media has had a field day, playing on every parent’s worst nightmare, painting the medics as cold and calculating. At the centre of this circus is a defenceless child, whose best interests seem to have been forgotten by many. How has it come to this?
I opened Joshua’s memory box this morning, and looked at all the bits and pieces the nurses saved for me from ICU: the tiny endotracheal tube that breathed for him, small as a straw; the tangle of wires and lines that I had to fight my way through just to hold his hand or stroke his cheek.
I am so lucky. My heart breaks for Alfie’s parents. In some ways, Alfie being removed from life support will give them a much-needed chance to hold Alfie, to kiss his face free from tapes and tubes, and give him all the love he needs at the end of his little life. I hope the medical team that have cared for him for so long are allowed to do their jobs and do right by Alfie, and the parents are able to grieve in peace.
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