24 weeks…

If you have read my blog for any length of time you will know that as well as enjoying a bit of photography in my spare time I am also a NICU nurse. Most people are fortunate enough to not know what that is. It stands for Neonatal Intensive Care Unit. That is the care of the pre-term and sick baby. I have worked in this area of nursing for 12 years and i genuinely enjoy my job.

I work at a large unit so we care for the most premature babies. Those that are at the cusp of viability, clinging to life by the tiny tubes and wires that are sustaining them and desperately trying to replicate the mother’s womb and placenta in a little plastic box. Every baby who comes through our doors receives the same level of care. It is a level of care that costs the health service a lot. Sometimes the babies we look after, if they do survive, survive with long term health problems, sometimes as a result of them being born so prematurely and sometimes as a result of genetics.

That ranges from the mild end of the spectrum to profound disability that need full time care. It all costs. If it isnt costing the health service (which it always does) then its costing the family. Ask the mum of a baby born prematurely if it has changed them. Ask them if they watch their child every minute, worry about what could have happened to their tiny body in those frightening early days and what that will mean for their baby in the long term. Ask them about the panic that floods their heart as they get asked to come to the ‘quiet room for an update.’

But then ask…..is it worth it?

For them its (i suspect) a no brainer. Ive watched parents bond with their babies, through the box, past the lines, the ventilator and the flashing, bleeping infusion pumps. They ‘see’ their baby fighting, they get their strength, hope and an understanding of just how tough these little babies can be. They ‘know’ these little scraps of humanity hanging onto the very edge of life. Their character, their spirit, their fight. How they will laugh and nod their heads when you tell them that you may have seen a little character trait in this sub 500gram babies. ‘Ah yes, she is a stubborn one!’ they will tell you proudly. That pride doesn’t stop there either, our babies that go home always return, whether thats in person or through a letter and a photo telling tales of how well they are doing, the milestones they are meeting. How they are overcoming.

What would those families be without these stories?

I read this article through this amazing bloggers website. She was outraged by  a local councillor who had made comments about children with additional and complex needs. His assumption being that these children who would be costing the health service too much should be euthanised. That the money should be used somewhere else. For a better purpose, those with a better outcome, greater need or whatever.

In my job we meet all walks of life and in the years that I have nursed I have come to this assumption that you can never ever make a judgement like that. The national health service, for all its faults, was established to provide care at the point of need. Not at the point where someone decides that, that person is not financially viable. Not worth it anymore.

Some of the patients we have are very vulnerable and ultimately some of them will die. The decision to not continue intensive care is never, ever taking on the basis of cost. Its actually so ridiculous it almost makes me laugh. What sort of society are we if we start to define someones very breath by what they might cost. That decision is always harrowing, always hugely personal and always only taken if there is really no hope of survival. It is usually a life changing, catastrophic moment for a family and it is never, ever taken lightly. We can certainly never reduce people with complex needs or without to the value of a spreadsheet.

I am essentially aghast that someone has taken to the media and said such things. You really have to wonder if it just for PR, dont they say that all publicity is good publicity?

My hope is that people who have theses sort of crack pot ideas don’t ever get anywhere near the reins of power. Please go and visit downsideup and show her some support, tweet, facebook or share your stories.