Thursday, 26 September 2013

Life and Death in the NICU

This is a reflective post, and some of the content is sad. Please don't read if you don't feel that its the right time for you. 



My thoughts this week are up and down, and I wanted to write them down and share them with you all. As most of you know my blogging, campaigning and volunteering lead me to a lovely job with Bliss UK's only dedicated special care baby charity. My job is lovely I get to find volunteers and place them in hospitals and in the community to give parents vital support, ultimately supporting the babies.

I still keep in touch with the broader premature baby community and was delighted to meet Beth who blogs as The Cotton Wife, an Australian mummy and amazing advocate for parents and their babies. I found this post of hers which I absolutely adore, Dear NICU Mum. I would encourage you to read it.

One thing I never do on this blog is share statistics of survival. I never have done and probably, seeing as I am finishing actively blogging soon, never will. There's a few reasons for this, one is that statistics are never fully reliable. Another is that in a sense statistics are meaningless. When I asked Joseph's paediatrician before he was born for numbers and chances she said to me this "the only thing that matters is whether your baby makes it, the numbers are not relevant so lets talk about what we know to be true, and that is that he is alive, he has had the steroids and we are ready, yes he is small, he has a long road ahead but let's stay positive".

When Joseph was born I spent a lot of time on the Bliss message boards. I met lots of different mums, and one of them was Nicky with her son Ethan born at 24 weeks. They had a long road, which had lots of bumps, bends and twists. You can read all about Ethan here. Sadly Ethan's battle with prematurity was a very long one, and he sadly passed away, not reaching his fourth birthday.

Recently I was at a meeting discussing a clinical trial and one of the things we had to do was look at a list of babies who had passed away. I was the only parent of a premature baby the rest were clinicans. "The number of babies is 19, which is much lower than predicted." The room seemed happy. To me I could picture every one. Their data was anonymous all I knew was their gestational age, the age they passed away, and the briefest of reasons. But to me each baby had a face, a mum, a dad and maybe siblings. For all that I know that of the 80 000 babies who are admitted into special care each year in the UK not all of them will come home, or start school, this still hurts. It hurts me that we can't all have the same outcome. And I feel guilty.

I love Bess' letter Dear NICU Mum but at the forefront of my mind today is that for some parents, perhaps even parents reading this now, this won't be true for them, their journey will have a different ending.

I have friends who have left the NICU with their hearts shattered into pieces. Or have left NICU for their hearts to be shattered later. I can listen, I can signpost, but I feel helpless.

In 2010 I attended Cybermummy the forerunner of Britmums. Whist I was standing around feeling lost the most beautiful woman came up to me, gentle with lovely curly hair, and a shy smile and introduced herself as Merry, both of us having been nominated for a MAD blog award in the Inspirational category. Merry lost her son Freddie, a term baby, in the NICU at 11 days old, the year after Joseph was born. She writes so beautifully and I would urge you to read this post on her blog A Patch of Puddles.  There is love and support there, but you have to know where to look.
 
How do we support these parents better? What do we say? What would our letter look like? Do I dare write one?






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