The life I never expected

Way back... Way back when... Way back when I didn't know how disabled Hugh was or would be... Way back when I didn't realise how destructive his seizures were... Way back when I thought the doctors could fix things... I thought,  I thought that once we'd sorted the epilepsy everything would be better, I thought that once we'd sorted the epilepsy I'd have to struggle to come to terms with having a child that needed to go to special school.
I didn't expect to have to come to terms with having a child that would be unlikely to live past his teenage years.
I didn't expect to come to terms with having a son that hardly knew I existed.
I didn't expect that, even once the terrible times had past, the devastating consequences would remain.
Hugh's epilepsy has robbed him of a future. Hugh's epilepsy has robbed us of the child he might have been.
His really bad seizures are less often than they used to be, And for that I am grateful, But they cast a long shadow, And I ne…

Resuscitation Status


I apologise in advance for the overly ‘ranty’ nature of this post, but I really feel the need to get this off my chest.  It irritates me immensely and in fact I find it inherently offensive that, once again, I have been asked about Little H’s resuscitation status.  For those not familiar with the term, it basically means “If your son stops breathing, would you like us to help him out or shall we just leave him to it and wait for him to die?”

Pretty offensive right?

Now, I can understand why such things do need to be discussed.  Imagine a terminally ill patient at the end stages of cancer, for example.  But I struggle to see how this is relevant to Little H.  He is a happy, smiley, mostly-healthy little boy.  But on at least four occasions I have had to justify his right to live.  I am 33 (for at least another week anyway) and my resuscitation status has never been called in to question.  If I collapsed in Tesco, it is a given that the emergency services would do their utmost to save me.  Why is the same consideration not given to my son?

 Is it because at nearly two and a half, developmentally he is still like a new born baby?  Is it because he regularly stops breathing during seizures and needs to be resuscitated?  Is it because his condition is life limiting as well as life threatening and that he is not expected to reach adulthood?  I’m not sure.  Probably a combination of the last two I expect.  I sincerely hope that simply being developmentally delayed isn’t significant enough reason to question his right to life – this isn’t Nazi Germany after all.

I referred in a previous post to a Doctor, who didn’t know Little H, who gave us a whole “Quality versus Quantity” of life talk, which basically implied that H had no real quality of life.  He has been ill at times, very very ill, but at no point have I felt that his long term quality of life is impaired.  My quality of life deteriorates when I am ill; I once spent a week in bed with tonsillitis – should I have been put forward as a ‘Do Not Resuscitate’? 

With my sensible head on, I can see that Little H rings a few alarm bells.  I can see that everyone involved in his care needs to have a clear plan.  I can understand that since he has ‘palliative’ care and attends a hospice, discussions such as this are inevitable.  And, although it breaks my heart, I realise too, that there may come a time in the future when this discussion is appropriate, when his quality of life might be such that invasive medical interventions would only add additional pain and suffering for very little gain; that ‘full resuscitation’ might not be in his best interests.

But that time is not now. 

Look at him.  Look at that smile.



“Do I want him resuscitated?”

How can you ask that question?  

Comments

  1. I'd give those cheeks the kiss of life!

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  2. To be asked this question is so wrong and I can understand how upsetting this must be. We should be able to turn to the medical profession for help, guidance and support, thank goodness Little H is being given that by his family. xx

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  3. I would be very upset at this question too if I had a happy, smiley, mostly healthy but developmentally delayed child. Oh wait, I do. And no, I haven't been asked that question xx

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  4. Areyoukiddingney: They are pretty cute cheeks alright!

    NannyAnne: thank you. Yes it is wrong.

    Blue Sky: It's horrendous isn't it. I'm glad though you've never been asked. Maybe they have a bit more sense over there?

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