Wednesday, 16 May 2012

He’s Going To Die Anyway…..

It's a harsh title for a blog I know - but that's what this post boils down to - and it's possibly what made you click on a link to read it.

It's a post written direct from the heart, because I see kids with special needs and disabilities as beautiful, incredible and very precious. I know God sees them in the same way.

I have some questions: 
Who can Judge the quality of life of a child? 
Who has the right to say which child deserves to live and which should be allowed to die? 
And - just what is quality of life? 
Because a child cannot do a combination of things other children can do - does that mean they don’t have a quality of life?
In my mind - no one has the right to judge, especially when that assumption is based on what is perceived to be a ‘normal’ life.  And yet… people do judge on all these matters.
When I was nursing I came up against this a lot, but having been out of that world for some time I have been shocked recently by the attitude of some doctors to my friend’s young disabled child.
This little one has many medical problems and disabilities that I won’t go into, as I don’t want people to be able to identify mum and child. 
This child has a great quality of life! Having also been diagnosed as having severe learning difficulties on top of everything else, it has become clear that this particular diagnosis was totally wrong. But mum found it difficult to have that diagnosis removed so they could get appropriate schooling, sadly this diagnosis is sometimes still believed at the hospital, even though it is so obviously wrong!
This is a child, who on spotting mum was upset, communicated the fact that he had written a song. The words were “Trust Trust Jesus”, repeated. Amazing words - done in an age appropriate way, showing faith and concern.
This little boy is loving, has friends (and misses them when in hospital), is VERY cheeky, has a wonderful sense of humour, can communicate and can understand the world around him. This child is greatly loved by all who have the pleasure of meeting him.
And yet…. The doctors around him question his quality of life, and then question how far they should intervene because of this. One doctor said it would all end in tears and that the last couple of good years have been ‘a fluke’.  On another medical team, the attitude seems slightly different with suggestions of what they can do to alleviate the problems he is currently experiencing, but at the same time questioning the quality of life he has as a result of this particular problem. 
My friend is looking at ways to show that her child has a great quality of life - possibly with a diary with photos and comments from friends, but why should she have to do this?
She know’s that her child’s life is going to be short, and obviously that is a source of great sadness. But she and all her friends want to see the doctors fight to make that short life the best ever, not back away because they question that quality of life.
Let me make it clear that the doctors are doing nothing wrong! But… It would be good if they could occasionally see beyond the patient and the medical conditions -  and see the child.
I’ll balance my comments by saying that there are times when you know it is time to allow a child to ‘slip away’. As a nurse I have sat and held many children who have been in extreme pain, knowing the only level of pain killers that would work would kill them. I have held them and prayed over them, and then asked God to intervene. But even then, with a child in extreme pain, who could not speak, and had little awareness of the world around them - it was not my role to judge. I would often ask consultants to treat a child with dignity and respect in the way they chose to medically intervene, and also question eeking out the child’s life for another 2 pain filled weeks, just because they could. So yes - there are times when you have to weigh life and pain, but always alongside the parent’s wishes. 

For my friend’s child though - this is not the case. He has a great life, and he has the right to have appropriate medical intervention, based on who he is…. a wonderful human being.  It should’t be dependent on the assumptions of that child’s quality of life. 


  1. I read this and very sad at some peoples attitudes.
    I have had people say to me they will pray for J for healing ( from her physical and LD's I assumed). This made me feel quite cross. She's perfect What does she need healing from?!
    I believe as it says in the Westminster Catechism 'The chief end of man is to glorify God and enjoy him forever'. That is what my gorgeous girl does every day of her life!
    We have a special song in our family which is J's and we first heard it on a link by Hanz. It's by MattyB and it is a cover of another song (and cleaned up a bit!) and he dedicates it to his sister who has Downs Syndrome.
    I now have it on my ipod and we have to have it on all the time...if you come to our house you'll hear J sing's call 'Amazing just the way you are'
    And do you know what..she is AMAZING just the way she is!
    Love it!

  2. Hear hear Claire - I was so thrilled when J joined your family!x

  3. We're all 'going to die anyway' sooner or later! But that doesn't mean our lives are worthless.


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