Revisiting Aneurin’s Diagnosis

A year ago today our lives were thrown upside down. We started the day as expectant parents, excited to see our baby wriggle around on a screen and ended it heartbroken, confused and scared of the days ahead.

If you didn’t follow me or this blog last year, it might be worth reading our diagnosis story. It’s written in two parts so is quite long (the second part comes up first but you just need to scroll down for part one). I wrote it ten days after it started so my emotions were still very raw but I’m glad I did. To this day those posts are still my post read of all time.

When I think about our time with Aneurin I think of the good bits. When I think of him, I can’t help but smile. In the 34 weeks we had him he gave us so much, more than I can ever measure and I’m so grateful for his existence. I’m also incredibly grateful that the majority of my Aneurin thoughts are positive. However, the negative exists and it is terrifying. Whilst my brain doesn’t revisit them all the time, they feel just as big as the positives purely for the power they hold.
I don’t want to think about the trauma we went through with him. I don’t want to be sad when I think of him, he deserves more than that. It’s impossible though to only ever think of the joy because the trauma exists. It is big and scary and very real. And for us, it’s plentiful. 
When we knew Aneurin had Down’s syndrome I thought that meant he was a different baby to the one we had planned for but now I realise he wasn’t. He was exactly the same. He was exactly who he was all along. Knowing that about him really didn’t make any difference. He was still the same baby; the one who made me want nothing but Marmite for weeks on end, who would kick his daddy every time he cuddled my bump in bed, who would punch the CTG monitor out of place when he’d had enough. He was our baby, our sweet Pea. He wasn’t Down’s syndrome and he wasn’t a congenital heart defect or an oesophageal astresia, he was our son. 
This week is difficult because of the events, not because of him. As sad as I feel for him because he was poorly, I know he never suffered. The memories of this week make me feel sad for us. I am sad that we had to go through that. I’m sad that we went from believing we had a perfectly healthy baby to being told that he wouldn’t survive birth, having to sit with that belief for days, then being told that they had got it wrong, he would live, coming to terms with what that life would mean only to lose him anyway. That is an awful lot for someone to process, especially in a matter of weeks. Although we processed his diagnosis and what that meant, I don’t feel as though we had time to process the actual events and the impact they had before we found out he had died. 
Small tummy, too much fluid, misshapen head, misshaped foot, may be Edward’s syndrome, not compatible with life, quick decisions about an amniocentesis, days of waiting, Down’s syndrome, more waiting, hours of tests and scans, a heart condition, an oesophageal atresia, endless doctors, discussions of termination and time limits, making a decision, details of operations, the reality of months in hospital. All in the space of 10 days. 
I don’t feel as though we had time to breathe, it all happened so quickly and thinking about it now makes my head spin. How on earth did we cope? Why did we have to go through that?

So many images keep flashing up in my mind. My husband’s face at the words ‘incompatible with life’. Him sitting on the floor of the family room with his head in his hands. The warmth of his hand under my cheek as they did the amnio. Hearing Aneurin’s heartbeat afterwards and feeling so broken by the sound. Standing at the window watching the world and wondering how on earth it was still moving. Having to get the words out on the phone to my mum and the sound she made.

There is so much I want to say, so much in my head that just doesn’t make any sense at the minute and honestly, I don’t even know where to begin with it all. But the two things I am hanging on to is that so, so much good came after this and that this memory does not belong to Aneurin. It is not him. This is ours and only ours. I will never allow these memories to taint our beautiful memories of him. He was always our baby. He never stopped kicking me or loving me, not even when our faith in him was rocked. He was perfect.

Mrs D x



  1. May 26, 2016 / 10:51 am

    Hi Love,

    I've never read your previous posts, and in all honesty, never even knew the term "rainbow pregnancy" until googling it moments ago before I started reading this post. I can't even begin to imagine what it felt like and reading your post brought tears to my eyes and my heart aches for you and the feelings you felt typing this, but equally, I'm in awe at how you take control of that and not let it taint your memories. Sending you hugs and love x


  2. May 27, 2016 / 12:55 pm

    Hi Elena.
    I remember reading your post last year and my heart breaking for you, your husband and family. At the time I was also pregnant and couldn't imagine what you were going through and to be honest I still can't. I can see from your posts that your son has brought joy to your life even if it was for such a short time.
    This past week & writing this post must have been difficult for you but I am also hoping that it was also therapeutic for you as well.
    Sending hugs 🙂
    Nicola x

  3. May 27, 2016 / 1:46 pm

    You know my thoughts and my words so I won't say them again. Nothing but admiration and sadness on your behalf. Always reading from afar, but a message (or a train) away when you need someone xx

  4. May 27, 2016 / 8:53 pm

    Nothing I could try to say would convey all the things I'm thinking. For some situations, there are no words, so instead I offer virtual hugs. xxx

  5. May 28, 2016 / 1:17 pm

    I remember crying with relief when I read that his diagnosis was Down's and not Edward's. I remember crying with disbelief when I read that he had died. Your baby boy made such an enormous impact on so very many people in his 34 weeks. He continues to make an impact with his legacy. You and Haydn are incredible parents and I have so much love for you both xxxx

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