I’ve said most of this before but feel it needs saying again.
When Sophie was in ICU in Alder Hey the final operation she had was a last ditch attempt to give her a chance at life. The procedure she had meant that for the rest of her life she would be a lot more poorly than she had been before going into hospital, that she was going to need much more medical attention for the rest of her life than we had thought, and that she would be lucky to make it to her teens. But at no point did the doctors say to us she wasn’t worth giving that chance. At no point did they say that she was costing them too much money and it would be cheaper to end her life then. At every point and every crossroads that required a decision, they did question (and made us question) whether or not the proposed treatment was in Sophie’s best interests. Sophie’s, not ours. That was ALWAYS the priority when making those the decisions. The week before Sophie died, the doctors told us that while she was still showing signs of fighting then they had their boxing gloves on. 3 days before she died, when they were quite sure there was nothing else they could do, they spent a whole afternoon taking her for an MRI which will have cost thousands in terms of machines and staff needed to take her. They did that, just in case they had missed something and there was something else they could do.
The day before Sophie died, the consultant spent nearly an hour trying to get a line into her collapsing veins just to try and give her a last chance at getting some medication and surviving. He knew full well that even if he could the chances of her making it were slim, but he did it anyway in case he was wrong and in case Sophie was still fighting. We saw how gutted he was when he couldn’t do it.
The morning Sophie died, I lose count of the amount of staff who came to see us and her, who cried with us and who were heart broken with us that between us all, we hadn’t been able to save her.
I can’t even begin to describe how the nurses treated Sophie because my heart hurts with gratitude when I think about how well they loved and looked after her like she was one of their own. They were parents in all the ways we couldn’t be while she was there. We have 3 sets of Sophie’s footprints. One was done by the cardiac ward nurses for father’s day, one was done by the ICU nurses on Christmas eve to brighten our Christmas day, and the last set was taken by the bereavement team after Sophie passed away. I’m pretty sure taking footprints and making cards out of them isn’t in their job description. At the time I had no idea how important they would be to me, but those nurses thought ahead and created those memories for us when our heads were too chocker to even think about creating them ourselves.
My heart will always break for anyone who has to go through the hell that is letting your child go. I don’t think there’s a right or wrong way to deal with it because it’s such a shit situation that should never happen and nobody’s written a rule book for us to follow. So I’m not saying this to judge others.
I’ve said all this about the staff at Alder Hey before, and I’m not saying that I know the ins and outs of other people’s situations or that Sophie’s is in any way the same situation. But I can’t say nothing at all when the same staff who did absolutely everything to save Sophie are being called murderers, neglectful and liars.
Who knows, maybe they’ve all had major character changes since we were in there. Or maybe they’re just doing their absolute best for the children they’re responsible for, regardless of the popularity of those decisions.