Sunday, January 15, 2012

Amelia and the refused transplant

The internet, and in particular the growth of social media, has certainly changed the way things come to my attention and the way I can watch and follow the resulting firestorm which often follows.  On Friday evening, I noticed someone I follow on twitter post a link to something he thought was disgraceful. I followed it up, and arrived here. It's a heartbreaking story, written by the mother of a 2 year old child with a serious genetic syndrome being told by a doctor at the Children's Hospital of Philadelphia (CHoP) that the daughter is not eligible for a kidney transplant (without which she will die), because she is mentally retarded.  Putting aside any medical reason for the refusal to transplant, I found the story shocking  - the use of the words "mentally retarded" I thought had gone from common use ages ago, and certainly wouldn't be used by a doctor, and the insensitive way the parents seem to have been handled. From the social worker taking a call during the conversation, to the doctor saying that he "had been warned about their involvement with the child". What parent wouldn't be involved with their child - especially one requiring special care?

The reaction to this blog post quickly spread. Other posts followed, there's a post which links to some of them here, a hashtag of #teamamelia appeared on twitter, a petition was set up which last time I looked had over 10,000 signatures and CHoP's facebook page changed dramatically. From a page of compliments about how staff had looked after various sick children, there are now thousands of comments condemning the hospital for their decision. If you Google the hospital a link to this story is the third in the list, and there are hundreds of them, and rising. As I type this, it's just starting to hit the national press in the US.

The hospital's PR department must be wondering what's hit them. How you react to this sort of situation is vital. They have posted a statement on their Facebook page, which in my mind, and many others, says very little and doesn't address the issues. Of course they will be unable publicly to comment on the particular case because of confidentiality.

So, I sincerely hope that this little girl gets the treatment she needs to prolong her life and give her the best quality of life possible, and I hope that public bodies learn the damage that can be done to their reputation by a single member of staff or a badly handled incident which gets blogged or tweeted about.

EDIT: The hospital PR machine has started to respond. They've posted a response on their facebook page.

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