In my last post, I reflected on the impending loss of baby Charlie Gard, the baby at the centre of a battle between his parents and the doctors treating him.
When I wrote my post, it was in response to the fact his parents had released a video on YouTube stating that they would be taking him off life support shortly.
Of course, the loss of an infant that has battled to live whilst in neonatal intensive care hits very close to home for me.
My own oldest daughter, Lucy, died after we turned off her machines. That was in response to the inevitable diagnosis that her Chronic Lung Disease (brought on by her prematurity) was going to kill her. What we as parents had the power to do, was to decide when and how she died.
Our choices were bleak.
We could leave her on the ventilator via palliative care and watch her die and in pain.
Or, we could control how she died – have who we wanted around us, give her a blessing to welcome her into Gods family by a Methodist minister (who we are still friends with to this day) and dress her.
We took control of everything. From the strength of the drugs she was being given to the gown she wore, to who held her as she passed.
She passed away at 12 noon, aged exactly one month, in her mummy’s arms.
The fact that we had that control, as parents, meant a lot. The fact that we said how, where and when was imperative.
The gaping hole both Lucy and her younger sister (by three minutes) Bryonie left in our lives was enormous. It is a level of pain and misery that I will never get over, heal from or forgive.
Knowing from bitter experience what little Charlie’s parents were about to face, I felt moved to respond.
Fifteen babies will die today in the UK and in fact, every day. 15 new lives, robbed from their parents. It is inconceivable.
Yet, with Charlie, when all seemed inevitable and lost, the situation changed.
World leaders began to get involved, from Pope Francis to the President of the United States. New evidence was put forwards by the medical research team who originally offered to treat Charlie in the US.
Now, the legal case and the research to date are all spinning round and round, whilst at the centre of this is a helpless baby boy and his desperate parents.
It seems that every day there is a new report detailing changes in the case as it continues, all the while, the fate of an innocent baby hangs in the balance.
I have to reiterate from my last post – If there was a cat in hells chance of my daughters being saved or their condition improved, I would hold onto that with both hands and not let go either. That is just how you operate as a parent. Your primal instincts tell you to protect your child and you do – you fight like tigers to give your baby every chance.
I believe that Great Ormond Street Hospital, who are treating Charlie, should allow him this treatment. Or, they risk condemning Charlie’s mum and dad to a cruel lifetime of ‘what ifs’ that will be more painful than most. This is simply because all possible avenues to help their son were not explored and still, he was made to die, despite there being an option.
The welfare of Charlie is the most important thing here. If there is a chance, then he should be allowed to trial it. There is literally nothing left for Charlie to lose and I think he is owed this. He has fought so hard for so long – it would be intolerably cruel to rob him of this. He has earned it.
I’m not a medical person, so won’t go into the research in depth and provide an opinion on it. I can only speak as a mother who has been there.
I have no idea where this story will end up going, but I will be watching with great hope and positivity in my heart.
My love to Charlie, his parents, family, friends and carers.