Thank you to everyone for your kind words and to all who have shared their compassionate views and devestating losses 
Anti, are you aware what dying from SMA is like?
My daughters ribs were like pieces of string, they were so thin, some were actually broken, along with her leg, which had been broken in pregnancy and had reset the wrong way, her arm and hand had also been broken, her other hand had been broken in pregnancy and had set incorrectly too, she had to be ventilated within minutes of birth, she wasn't strong enough to breathe by herself, her muscles weren't working at all.
The ventilator caused an infection which built up fluid in and around her lungs, which put additional pressure on her ribs and heart.
She was so tiny she couldn't have much pain relief at all and I could see from the machines that she was distressed and in pain all the time.
Are you aware how terrifying that is?
Do you know, and I realise how awful this makes me sound,I felt jealous of the mother and baby across from us because her baby had complications that left the poor child completely unaware of anything. Can you imagine being driven to feeling jealous of someone because their baby can't feel anything at all?
I don't know how else I can explain how fucking awful this conditon is. To know your child is trapped in a useless, painful body, that will only get worse, but they have a fully functioning mind and are aware of everything, to be unable to comfort your child because to cuddle them would cause greater pain, possibly even break a bone. It is cruel and devestating condition that only gets worse as time goes on.
I don't suppose sharing the pain my daughter suffered and the heartache and guilt I face every day will make a tiny bit of difference to the posters determined to condemn this Mother so I'm not really sure why I'm trying really 