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Posted by Philip on 19 May 2014, 12:13 pm in , , , ,

Child's medical treatment highlights tension between principles and reality

Charley and her mumMy attention was drawn this morning to this TVNZ Sunday segment about Charley, the girl with significant brain damage due to medical misadventure at birth. Her parents opted for the "Ashley Treatment", hormone therapy that will keep her small and infertile for her whole life.

The parents' decision has had human rights advocates, ethics comittees and open-minded medical professionals at loggerheads. Does the treatment breach her human rights or will it allow her to be cared for by her parents and avoid a family history of heavy menstral bleeding and pain?

I can see both sides. I think it's the sort of issue that gets polarised. As Charley's mum said, it shouldn't be easy to do and I think the scrutiny is important to ensure people's rights aren't run roughshod over. While I share some of the concerns relating to human rights and ethics (many have fought long and hard to secure them), I don't think for one minute these parents should be demonised for wanting to protect their daughter from discomfort and possible institutionalised care as she grows.

Issues such as these become septic because they are complex but are treated like there are only two simple answers — right or wrong. I think Charley's parents have been courageous and they want the best for their child.

I don't think their actions are ten steps back for disability rights, as someone feared. They have started a new conversation about the tension between the principles of human rights and the reality of quality of life.

Let's keep talking. 

Image: TVNZ

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