The myth of the irrational parent

Will parents really do anything to save their child?

This article by Zoe Williams in the Guardian today is just another in a long line of articles about the case of Charlie Gard saying exactly the same thing.

The accepted message is:

• The doctors are dispassionate and able to accept that the child is desperately ill and there is nothing to be done.
• The parents are desperate to save their child at any cost, will do anything at all to save him and are behaving in an irrational way; however this is okay because any parent would do the same.

On winning

Even if you do 'win', there are a lot of losses

I wrote this for another website. As far as I know, they haven't yet put it up, but it does reflect our feelings on our experiences and I wanted to share.

“While we do not all agree that this is the right course of action, as a consultant body on the neonatal unit, we have decided we can offer Rumer resuscitation as we would any other child.”

The responsibilities of parents

Quite often when we asked for things like access to Rumer's notes, or to be involved in medical decisions, we were told, in order to explain why they had policies against these things, that:

• "No other parents have ever requested this."
• "You are exceptional parents. Other parents wouldn't understand the notes."
• "Not all parents want to be involved in medical decisions; some parents want us to make the decisions."