human rights

http://news.bbc.co.uk/1/hi/uk/7956450.stm
I have been in many a situation when a child's ventilatory support has been removed. It is never an easy decision. It is always made with the parents and relatives fully informed and part of the decision. Doctors DO NOT remove ventilators because of cost! I watched in horror as Ruth Winston-Jones lamented the doctors who had looked after her child Luke. Accusing them of wanting him to die because of Money. He was costing too much to stay alive. Personally I would sue this embittered woman. What a wicked thing to insinuate.
As paediatric nurses we are our children's advocates. We will go where the parents dare not. I have questioned doctors, disagreed with things and bloody well told them. Parents are too close. Of course they don't want the child, not matter now fragile their cling to life, to die. I cannot begin to imagine the horror of losing your precious child. But sometimes the child's life is so horrific. Attached to a ventilator. Having air forced through your lungs. Noises lights everywhere. Drips and drugs. Having tubes inserted down your throat to suck out secretions. Where is the quality of life? There is no comparison to a normal child's life.
No hope of survival, no cure, just a parents love willing him to carry on as long as possible to delay the terrible pain of loss as long as possible. How can that be fair?
I feel deeply sad for them. They will, like Mrs Winston-Jones, never get over this. The hospital staff will feel like they have failed. Not failed in their care of the baby, but failed the parents. They weren't able to reach a joint decision that was to the best interest of their baby.
I'm just glad I'm not the one who has to remove the tubes.
Dx

Unfair

I've felt sad this week. Danielle told me a while back that a friend of hers was ill. It was suspected some form of cancer. CANCER, the big nasty word. Reassurance that lots of people were saved and he was a child, they'd try very hard to help him. His name was Jamie Fish. He was born on the same day as Danielle. He was diagnosed with a form of cancer Christmas Day and died yesterday 2nd March 2009. 15 years and 1 month.
It has hit Danz hard. She is distraught. They went to Venice and France together, they sat on the plane together. But it's the knowledge that people of her age do die. That terrible things happen not to strangers but people she knows.
He seemed like such a lovely boy. No one had a bad thing to say about him. Everyone loved him and he was always happy and positive. Danielle gave me a run down of each individual teacher who'd broken down and cried yesterday to my bemused face. I'd thought it odd how she seemed to take heart in seeing them upset but I now understand, in retrospect it was that they are human. They are just like her, they care. They genuinely liked Jamie and are truly upset that he has gone.
I have seen many children die. I have switched of life support and been the one to tell the family their beloved child has died. It never gets any easier. There is no magic way you can tell yourself to cope. But remember that as awful this tragedy is and as terrible you feel this isn't your child. This is their child and your grief cannot overtake theirs.
I cannot imagine how Jamie's mum is coping today. I looked at the girls last night and wondered if I'd noticed if they were that ill? We seem so busy everyday now. Gone are the days of playing and doing loads of stuff together. But to lose one of them would be unthinkable.
So my sadness seamlessly sweeps towards Steve. We haven't seen Wulfric properly for 6 months now. Wulfric isn't dead. He is very much alive and choosing along with his stupid mother to cut us off from his life.
Life isn't fair is it?
Jamie, I hope your next life is worthy of you mate. I hope you live a long and happy one with much love, kids, and fun. Everything you missed in this one.