I don’t think that Hollie Dance is making the right decision. It wouldn’t be my choice. I think this is an unusually clear cut case medically but she still has my every sympathy and I understand her rage.
I have lived the high level conflict with the NHS over months too. We engaged a barrister but never got as far as court because my daughter deteriorated and we chose (probably based on poor advice) to withdraw treatment. Parents like me don’t comment on threads like this because we are too fucking traumatised. Seven years on I get severe tachycardia and fainting in hospitals which is a bit of a problem because I work in one.
Hollie will be being treated badly in the hospital by the staff, she will be being kept misinformed, being patronised, gossiped about. She will feel the hate. I’ve talked to lots of parents in high conflict situation including those who have had high profile cases and their experience is similar. I wrote an article once when I was feeling I needed to pander to medical staff still www.medicalmediation.org.uk/content/stories-rumer/
and a lot of it still holds true. There are no winners in these conflicts and they still are often handled badly by medical teams who ultimately do have the responsibility for handling them well
And afterwards there is the rage. For high profile cases often that rage is worse because their stories are never fully rounded. It must be hard for Charlie Gard’s parents for instance to see him brought up again and again here without the acknowledgment that the ethicist who testified against them ultimately acknowledged he’d been misinformed and that they had been poorly treated by GOSH. The stories in these cases are so complex many of them can never be told fully to strangers. I struggle to tell mine, explaining the PTSD I give the soundbites
How the neonatal consultant via email hoped I had a stillbirth
How the palliative care consultant said I was lucky to have a baby with a life limiting condition because she’d be quiet not like her own healthy children
how they did an invasive investigation under anaesthetic and agreed among themselves to not infact do it properly as they didn’t want ro to treat but never told us and lied to us about the results
people think those things are terrible but honestly they weren’t the big problems.
Parents in these situations are David against Goliath and when all is said and done, they’ll be alone, cut off from support and counselling services (the director of children’s services instructed their counsellors to take us off their list) , denied information and unable to ever find peace. Rage is eternal and sympathy hard to find. Even more so I imagine for high profile cases, if your every decision and action has been analysed for weeks and your motives questioned, people think they know your story better than you.
Almost all parents who fight want what’s best for their children and we should remember always that best interests are subjective. I agree with the majority on this case as to what Archie’s best interests are but I doubt his mother wants to harm him. In many cases I think best interests are far less clear cut.
I’m glad Hollie has the opportunity to enable Archie’s situation to be considered by the courts but I know it won’t bring her peace to have ‘done everything’, there has to be a better way to handle conflicts. One that is less adversarial, kinder, more collaborative and honest. That leaves fewer families living in a wave of rage.