Why no other family should ever be put through our heartache
It IS now more than a year since our beautiful son Charlie lost his life seven days short of his first birthday. Sometimes it feels like yesterday. Sometimes it feels as if Charlie’s father Chris and I have lived an eternity since then.
But, throughout the bewildering aftermath, there has been one constant: our unwavering belief that something had to change to ensure that other parents do not have to go through the same heartrending battle we fought to try to save the life of our son.
It would, we agreed, be our way of honouring him and making sure his short life was not in vain.
that’s why we’re absolutely delighted that a new law was laid before Parliament last night which is the first step toward Charlie’s law – a law that will eventually give parents of sick children – or any loved ones fighting for someone who cannot speak for themselves – a voice.
the introduction of better access to mediation and medical ethics committees, combined with the right for parents to seek treatment for their children that won’t cause them harm would – we believe – help eliminate some of the conflict that can all too easily arise between medical professionals and parents in complex cases.
It was just such a conflict which Chris and I found ourselves mired within after Charlie was admitted to Great Ormond Street Hospital two months after his birth in August 2016.
there, he was diagnosed with mitochondrial DNA depletion syndrome.
As any parent of a profoundly ill child will testify, a diagnosis like this is its own kind of hell, one characterised by helplessness, anxiety and fear.
Yet in our case that hell was exacerbated when we found ourselves in disagreement with doctors at GOSH over the best course of action for our son.
After extensive research and after speaking to many experts all over the world, Chris and I were both convinced that experimental but potentially life saving treatment available in the US would give Charlie his best chance of life.
His doctors initially agreed. But then changed their minds.
We couldn’t countenance it. Would any parent, while there was still a fighting chance that their child could live?
Anxious to keep the lines of communication open, we requested mediation – one of the proposals we now hope will be made compulsory in law.
If we could get everyone around the table, we believed, then we could all air our thoughts in a constructive and transparent way.
that didn’t happen. Instead matters quickly became antagonistic, escalating to a bitter courtroom battle.
It’s impossible for anyone who has not been in our situation to really understand how bewildering and overwhelming everything was.
Like many people, I had occasionally seen news stories of grimfaced parents going into battle for their sick children and thinking it would never happen to us. But suddenly there we were, not only worried sick about our son but also forced into a position where the hospital took us to court to end our son’s life. We did so without legal aid and with very little support, facing an NHS with vastly superior resources. It felt like the odds were stacked against us from the start. Looking back, we lost most of our autonomy the moment we stepped through the hospital doors.
If you’re caring for a child at TURN TO PAGE 14
‘Odds stacked against us’