Dignity4life are collecting stories about eol care and nhs hospitals.
There is one excellent story about how “awful and amazing” picu is. The painful procedures, invasive tests, drugs, sedation. That watching your child subjected to all this when it is clearly hurting them is horrendous.
I suppose that’s where the dichotomy with CH and AE is. With no way of demonstrating pain, they appear peaceful, a sleeping child just waiting to wake up. It is easier to throw futile treatment after treatment at an unresponsive child, than one who can react and show fear and pain.
There’s another one of a baby born brain damaged at birth. Her mum describes her anger at the medics that they couldn’t help, her belief that given longer a miracle might happen. Then she talks about gathering herself to “fight” to keep her child alive, and her realisation that it would be for her not the child, and her decision to withdraw treatment.
She also says that prior to this she believed that medical staff had answers. That they always reached a diagnosis, they always knew why, and could always come up with a plan for treatment. The realisation that sometimes there just were no answers or reasons, and no treatment, cure or fix, was an entirely new concept for her.