Update 03/07/2017: Since I posted the original post, news came through that Charlie’s parents have been allowed to have more time to say their goodbyes to him. There is never enough time in this entire universe in order to say goodbye to your precious baby. I hope the time they have been given provides them with more precious, beautiful memories.
Today, fifteen babies in the UK will die. They will die shortly before, during or after their birth, up to four weeks.
However, today, a baby outside of that statistic because he is 10 months old, will join the countless other babies and young children that will become angels today.
Little Charlie Gard has an extremely rare complication: mitochondrial depletion syndrome. He can’t do a lot of other things we all do automatically, like breathe on his own or move. He cannot swallow, see, hear nor cry and is also brain damaged.
His parents, though, have fought with the ferocity of lions to try and find a way to save his life – like any decent parents.
A single path of hope was opened up for them, which could take them to America with their baby, for some early in development treatment. There was no guarantee that the treatment would work, owing to its early stages of development – but there was a chance.
A chance to save your baby’s life is absolutely beyond precious – a light in the pitch darkness of your tumble-down world when you’re clawing away at trying to find a way to save your baby.
The doctors in charge of Charlie’s treatment at Great Ormond Street Children’s Hospital though, all agreed that the treatment wouldn’t work and that moving him to America would cause him more harm.
The parents then fought the doctors in charge of his care to give them and Charlie, this one hope of treatment.
They fought the hospital in the law courts of this country, who all agreed with the doctors. They fought them in the European Court of Human Rights, who sided with the British judges.
They were told to accept the decision. They were told that he would be allowed to die – whether they wanted it or not. Of course, the answer is not… but they have no choice now, but to let him go.
This particular case reaches out through the news sites and grabs at my heart: I have been there.
Not exactly where Charlie’s parents are right now as our circumstances are different, but close enough.
If there was a single hope that my daughter, Lucy, could have been saved by treatment in America, I would have done exactly what Charlie’s parents have done. I would have sold my house, my organs and my very soul if it meant she had a chance at survival.
If someone offered me the opportunity to save my baby, I would grab hold of it with both hands and work night and day to never, ever let go of that slight hope.
Sitting next to your baby in neonatal intensive care changes you. The non-stop beep of the machines, the endless shift changes, ward rounds and invasive tests that make your tiny baby suffer…. All reshape you. There are no windows, no light. You have no idea what time it is, what day it is. You forget to eat and drink and spend all your time crying or fighting extreme fatigue whilst trying to process such complex medical terms and practices that took the professionals years to learn.
You become an absolute expert on your babies condition. You research online, in text books, the paediatric BNF, locate and speak to experts in various fields, hold long research themed conversations with the neonatal consultants in your babies unit – your baby and saving them becomes your world and everything in it. Do not think that we parents are ignorant, stupid or lying to ourselves – we fight like tigers to find a way to help our babies.
You feel helpless as a parent. You cannot do anything to make it better, other than as a mother express breast milk. You cannot help much with your baby, partly because you are terrified of hurting them and partly because you don’t know what to do – in my case, Lucy and Bryonie were my first babies.
When you are there, in that bizarre, twilight world, you come to notice one inalienable truth: your baby wants to live.
They fight through every moment of every day. They WANT to go home with you. They want and need skin to skin. They want to feed from you – they want this life… this miserable, hopeless life that we lead. Every breath, every movement, every millisecond is them and their fight to stay with you. Who the hell is anyone to say that battle to live should end?
Our daughter’s courage, her strength, her stubborn grip on life will remain with us forever.
You hear the doctors tell you that letting her go is what’s best for your baby; to turn those sodding machines off and let her go. All you want to do is grab them by the collars of their lovely blouses and lovely shirts and yell “but she wants to live and she’s fought so hard!!!!!!!!”
In my case, the decision was almost taken out of my hands by her. I did feel massively pushed into it by the medical staff, but then, how long is long enough in order to get your head round such a massive loss? How long is long enough to say goodbye?
How can your tiny, perfect, sleeping little angel baby, lying there in her incubator, be gone within the next couple of hours? She looked so peaceful before and after.
That moment they remove the breathing tube and you know that is it… It was the most horrific moment of my life. I will never, ever get over it, forgive it or “move on”. This pain is mine to bear as I am her mother. We parents keep the love and the agony of that love within our souls forever.
Never doubt one thing: we do what is in the best interest of our baby and must act on their behalf. We were given the decision to either leave Lucy to eventually die on an incubator, or to take control of the situation, remove her from the machines ourselves and let her pass away, bundled up in her mothers arms.
We checked every single medical fact several times over and got opinions from different medical staff before we made our decision. There was no hope for my beautiful Lucy, but if there was a hope? I would have hung onto it.
I am dreading reading the news updates saying that he has passed away. I know that feeling. I know that horror, that agony, that breaking misery. I know how it feels to hold a tiny, perfect baby in my arms as she silently passes away – goes on to that silent place.
My eyes are filled with tears as I write this. The pain from that day 10 years ago is still raw and vicious. I may have had two more babies since I lost Lucy and Bryonie, but they are not replacements. You do not go off and have another and everything is all forgotten. You cannot dismantle grief of this kind.
I wish I could hug his parents. I know they did the right thing by fighting to save him. I would have done the same if the opportunity was there for any of my babies.
I know they will want to not carry on, because that emptiness that his loss with leave in their lives will be complete and consuming.
My message to them is this: You have to carry on – you have to live to remember him and make sure others never forget. You have to jump up and down and scream and wave your arms to remind the world, over and over again, that he lived and he was so utterly loved.
The world’s attention and sympathy will ebb away like the tide after a tsunami and you will be left surveying the landscape the water leaves behind. Within this incomprehensible devastation, you must rebuild your lives.
When the world has forgot you both and your son, and it will, that is when and why you need to be there – to remind everyone. You will have a lifetime of ‘what ifs’ and ‘could have been’ and you should not let anyone forget.
Others will tell you ‘it was for the best’ and ‘everything happens for a reason’ and you know from the stab of pain in your heart at those words that all that “comforting” words are just complete bollocks. It wasn’t for the best, he should have lived. It didn’t happen for a reason, what possible reason could there be for him being taken away?
Don’t think it is because God thought you would be shit parents and that is why Charlie was taken. At the end of the day, you were robbed – Charlie was stolen from you. He had his whole life ahead and some illness, some twist of evil fate chose him.
I am lost for what else to say, but my words on this subject feel somewhat automatic, as if they just pour out of me like water rushing over the top of a waterfall. I know the feelings, I know the experience, I know the lifelong pain.
Expect to be broken in ways you did not think you could break. Expect to hear stupid people say stupid things and be upset and angered by that. Expect to burst into tears at utterly strange moments, because something reminded you of your baby in some way. Expect the worlds mass pouring out of grief to end and leave you feeling shipwrecked on a desert island of grief. Expect sleepless nights and nightmares. Expect not knowing what to do with yourself. Expect others to judge you despite having no experience (thank goodness) of what is feels like to lose a baby in such circumstances and be in your shoes.
Expect to realise that you were utterly glad that you knew him, that he was yours and that you got to love him. Expect to open your memory box of him and spend hours remembering his smell and his tiny quirks. Expect to feel grateful for the pain – because if you didn’t have it in your heart, you wouldn’t be his parents – a burden you wouldn’t be without.
Please also do not ever feel bad for crying. Don’t hold back – your baby, your loss is worth every single tear. Don’t try to hide it, bury it or ignore it. This isn’t the sort of pain you can contain. If you try to, it will build up pressure and erupt, damaging you more.
I hate that Charlie’s parents and at least fifteen other babies will be going through this today in this country. I wish the loss of my own daughters was the last time anyone anywhere lost babies.
I can’t take the pain away from any family today going through this, but I can offer my love, support, thoughts and belief in them.
Charlie – fly to heaven, perfect little boy. My precious little girls are in heaven and they will play with you and make you feel welcome in that beautiful, warm and happy place they now live, with all the other precious babies and children who left this earth too soon.
Charlie’s parents – I’m so sorry you are going through this. I’m so sorry you are joining the ranks of us fellow bereaved parents.
Be gentle with yourselves and I hope for warmer, brighter days to come,
If you have been affected in any way by the loss of a baby, no matter how recent or long ago, then please visit SANDS:
Freephone Helpline: 0808 164 3332.
Open Monday to Friday from 9.30am-5.30pm and Tuesday and Thursday evenings from 6pm-10pm.
Image Source: https://uk.pinterest.com/explore/baby-angel-wings/