Thursday, 13 July 2017

Charlie Gard

For the last couple of months, the tragic case of Charlie Gard has been in the news here in the UK.  The 11 month old has encephalomyopathic mitochondrial DNA depletion syndrome, a rare disease, that has left him unable to move or breathe, and with severe incurable brain damage.  He has been at Great Ormond Street Hospital, the foremost p├Ždiatric hospital in the UK, and doctors concluded that there is nothing more that can be done, that he may well be in pain, and that life support should be turned off.  His parents contest this and have raised over a million pounds to take him to the USA for experimental treatment.

You can read more of the ins and outs of the case in the link I give above.  I just want to say at this point, that I simply cannot imagine the grief and despair of his poor parents in all this.  They have a child who is terribly sick, and they fear losing him.  I had a cousin who lost a young son to a different mitochondrial disease, and it was simply heart-breaking.  I also want to say I deplore the attempts of the various interest campaigns to use this family as part of their cultural wars.  The "Christian" Defence Coalition, and even the Pope and Donald Trump have all, unhelpfully, intervened, and muddied the waters with their grubby attempts to exploit this family.

I do, however, wish to weigh in and make two points here.  First, I do think there has been a failure in care by GOSH.  By that, I mean in their care of young Charlie's parents.  At some point, communication has broken down and been replaced by distrust.  How did that happen  Did a specialist not take care in explaining a stage of Charlie's illness?  Was a consultant a bit patronising or dismissive of questions?  Did a doctor appear in haste, and not take time to hear the concerns of Charlie's parents?  Something happened to allow mistrust to grow to the point that the two sides are so far removed they are acting against one another in court.

Secondly, and I want to say this with compassion, parents do not always know best.  The fact that they have been put into such a tragic situation does not allow Charlie's parents the trump card in knowing and deciding what to do.  If parents knew best, doctors would be altogether unnecessary.  GOSH is a world-class hospital.  The doctors on this case are formidable experts in their field.  Expert advice, despite what Michael Gove asserted in the Brexit arguments, ought not be ignored.  Sometimes, an expert consultant knows what is best for a child, rather than a parent without medical knowledge, and with all the distractions of their emotional involvement and pain.

In all of this, a young life of suffering continues, and is artificially prolonged until the arguments are settled.  At the heart of all the discussions must be what is in the best interests of that young life.

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