Tom Goodfellow

We’ve seen mob ignorance at its worst in the sad and sorry saga of Charlie Gard

As the sad and sorry saga of little Charlie Gard limps to its inevitable conclusion it is time to reflect on some of the issues it has raised.

I personally find the antics of the so-called “Charlie’s army” quite unseemly. We see pictures of weeping adults and children clutching teddy bears and tying balloons to the GOSH railings, all luxuriating in their vicarious grief, and calling on the hospital authorities to “save” Charlie while the paparazzi flash their images around the world.

But however genuine their emotion it is completely inappropriate and uninformed.

Charlie is what he is – a tiny human who, through a cruel twist of fate, never made it, and who is still breathing only because of complex medical technology. Only his doctors have the full clinical picture, and only they can make sensible judgements on management, but from the information released it seems that his brain is damaged beyond recovery, a scenario which is relatively common in any neonatal ITU.

The ‘army’ have done their best/worst to influence the outcome, but this has been based on pure sentimentality; that is emotion without truth. “Charlie deserves a chance of life” they chant, with no appreciation or understanding of what the little lad might be suffering or will suffer in the future while unable to move, breath or feed naturally, and with no hope of improvement.

This is mob ignorance at its worst.

No one would wish to make harsh judgments on Charlie’s parents who have lived through an appalling situation, yet the campaign and the media attention has elevated them to the status of “victims” – victims of callous hospital doctors, and of the unfeeling courts who have clearly got it wrong.

We have learned that GOSH staff have received thousands of offensive texts and messages, including death threats; an indicator of just how bad things have become.

Victims frequently have a huge sense of entitlement, and Charlie’s parents are no exception. They are demanding that Charlie be sent home on a ventilator, accompanied by experienced paediatric doctors to care for him. The judge will have to decide if this is reasonable or practical, but no other parents in a similar situation would have such a chance.

The offer of the US ‘expert’ to treat Charlie raises some interesting issues. If the situation was reversed and a private clinic in the UK had offered to deliver completely untested experimental treatment to a foreign child I would imagine that there would be some very large ethical questions raised.

You cannot use helpless children as guinea pigs without going through a rigorous research and ethical protocol. That this doctor could raise the hopes of Charlie’s parents while having no access to his clinical records or any conversation with his doctors raises some troubling questions to say the least, but the word “irresponsible” comes to mind.

The simplest solution for GOSH would have been to agree to the parent’s request and wash their hands of the problem, and save the hospital a lot of time, trouble and money. It is to their credit that they put the interests of the lad first.

This was the correct decision although it will have cost the hospital hundreds of thousands of pounds in legal fees.

I am a trustee of an organisation which supports the families of homicide victims. It is strange how some murders will generate huge media interest while others hardly get a passing mention. This can be a cause of huge distress to the families who wonder why their murdered child seems so unimportant compared to others.

There will be parents of sick or dying infants who will experience similar emotions. Why is Charlie’s life so much more important than the life of my child? Why is he on the front page of every newspaper while our precious little one slips away unnoticed by anyone except us?

These are not easy questions.

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3 Responses to “We’ve seen mob ignorance at its worst in the sad and sorry saga of Charlie Gard”

  1. marka says:

    Did GOSH think that battling the parents with a costly legal case was a sensible use of public money which could have been used to help sick kids?

    Did the hospital seek or consult the public before embarking upon this costly endeavour?

    Not quite so “world class” in their decision making me thinks!

  2. Finella Brito says:

    I beg to disagree on certain aspects. A patient is diagnosed with an illness where the medics ( frequently self opinionated and sometimes wrong) deem there is no cure. This happens in Oct 2016. An experimental treatment is available. May be an infinitesimal chance but chance it is. They do not do anything till July 2017 when it is far too late. GOS are negligent in not having sent the child when the diagnosis was first made. Why did they keep the baby in a situation where he was guaranteed to die. Was it disability discrimination trying to save the life of someone who would be disabled?
    Who knows how disabled he would have been. Patients wake up in mortuaries alive just because a doctor has come along and said they were dead. As a doctor I believe if a patient or their family want to live They should be helped in this regard. What right do we as doctors have to act as Gods?
    Finella Brito

  3. Tom Goodfellow says:

    I am sorry but if you bother to read the timeline statement published by GOSH and submitted to the court it gives a very different story to that so erroneously aired on many US and some UK media sites.

    http://www.gosh.nhs.uk/news/latest-press-releases/latest-statement-charlie-gard

    Charlie was reviewed by external experts, and their conclusions confirmed that of the GOH doctors.

    The US “expert” had not seen or reviewed any of his clinical records or images.

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