The Case of Charlie Gard – When is it right to ignore the final wishes of parents who have already lost their child?

The Case of Charlie Gard –  When is it right to ignore the final wishes of parents who have already lost their child?

I’ve followed the Charlie Gard case with a sadness brought about by the heart rending situation his poor parents find themselves in, of having to rely on a Health Service that seemingly can no longer continue to view his treatment, or the continuance of his life as ‘viable’.

The 10 month old is to have his life saving intensive care treatment withdrawn by Great Ormond Street Children’s Hospital, which means that very shortly, Charlie Gard will die.

Born a seemingly healthy baby, his parents first took him to GOSH in October when he became lethargic and unresponsive following a diagnosis of infantile onset encephalomyopathy mitochondrial DNA depletion syndrome (MDDS).  Since then, Charlie has been receiving treatment within the Hospital’s Intensive Care Unit.  Initially life-saving, the emphasis of his care was altered by GOSH following a ruling by Mr  Justice Francis in March, when the care became palliative.

Since then, there have been numerous moves by Charlie Gard’s parents, Connie Yates and Chris Gard to overturn various legal decisions regarding the care of their son and more recently, in accepting the last and most recent decision to switch off his life support machine and allow the infant to die, Connie Yates and Chris Gard naturally asked the court to fulfil on of their most cherished wishes – to take their child home.

Having abandoned their fight – or their plight – to win the right to take Charlie to the United States to receive an experimental therapy called nucleoside, Charlie’s parents once again find themselves and their dying child at the mercy of the English legal system in the decision about how, and more fundamentally, where their child should die.

Today the Court will reach it’s final decision, and as I write, that decision has not been made public. So Connie and Chris still have a last branch of hope to clutch to, in being able to deliver their final promise to their son.

I cannot understand their emotions – who can unless they have been placed in and have lived this situation themselves- and who would wish to? To watch helplessly as each passing new day brings the old knowledge that their child is soon to die and that there is absolutely nothing more that they can do to prevent it?  The only thing they want to do now is fulfil that whispered promise to a baby son who may, or may not be able to hear them as they tell him that one day, he will come home with them.

Yet I can understand one thing – their need to be with their child in the familiar surroundings of a home he will never grow up in; I can understand their desire to be able to be parents once again to a little boy they will never be able to be adults with.  There will be no first day at school for both parents to remember; Charlie will not experience the growing pains of teenager-hood; his father will not be able to hand Charlie his first pint and enjoy the sheer exultation of having ‘man to man’ discussions with his son that he and his mother have nurtured to adulthood; Charlie’s mother will never hold one of Charlie’s sons or daughters in her arms and have the simple pleasure of being called ‘Grandma’.  If life has denied them these simple pleasures, then surely in Charlie’s death, they should be able to say goodbye to him in a manner that they decide, not the Courts.

The Courts have governed this young baby’s life since his diagnosis. Surely they should not be able to govern his death, too?

Is it inhumane to switch off all the life support machines and simply let his parents take him home, without the ventilators, the emergency equipment and the team of round the clock doctors that GOSH was able to make available to go the US but not Charlie’s home down the road?

GOSH talks of what the impact will be on the baby’s suffering, but how do they know he will suffer? How do they know that he has not been already suffering as he lay there with his tubes, and his ventilators, and all the equipment needed to give him the palliative care that he has been allowed?

This is the problem facing everyone in the end. How much suffering is too much?

When I say that I was lucky that my daughter died in her cot, quietly in the night with seemingly no signs of significant distress just the sad fact that she simply stopped living, I mean this in the sense that I did not have to experience the soul destroying pain and heartbreak associated with the overwhelming knowledge that your child is going to die, and that your child may die without you having fulfilled a promise to that child.

I was lucky because whilst I experienced the indescribable pain of losing a child through death, I did not lose that child while she was still alive and if she knew anything about her passing , she did so in the familiar surroundings of her peppermint and pink nursery, with her brightly coloured cot mobile tinkling about her blonde head; she was snuggled into a duvet cover that she regularly discarded every night, preferring to do a perfect impression of a starfish whilst she slept – her fat little fingers usually curled around a favourite teddy bear. That same bear which I slipped into her tiny, white coffin on the morning of her funeral, so that she would not be alone in eternity.

So whilst the Legal Eminences of this land ponder on the question of whether or not Charlie Gard will suffer if his parents are allowed to take him home for his final hours, perhaps they should turn the question around and ask themselves will he suffer is he is NOT allowed to be taken home for his final hours?

Whenever and wherever the end comes, Charlie Gard, please rest in peace, little one.

 

 

©Amy J Steinberg 2017

 

 

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