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  • Writer's pictureBeth Wankiewicz

The Baby Loss Hub - Neonatal death - Arthur's mum

On 21 October 2021, our baby boy Arthur arrived and left us only six hours later. After a totally normal and low risk pregnancy, and a relatively quick drug and intervention free labour at our local birthing centre, our world collapsed.

I will never forget the moment Arthur arrived. The overwhelming relief that labour was over, the incredible mind-bend of ‘how was this person just inside me?!’ and the pure joy and excitement of a lifetime of getting to know and shape this tiny human. That moment was over too soon. Arthur was whipped off my chest to the resuscitation table and our midwife and her colleague began working on him. Soon paramedics were called, and advice was being relayed down the phone from doctors in the NICU at our nearest hospital.

My husband saw it all. He saw the chest compressions, the manual breathing tool that our birthing centre is equipped with (for a low-risk pregnancy, why would you need anything else, right?) I was shielded from it all, and had to keep reassuring my husband, who was becoming increasingly upset. ‘It’s ok babe, babies sometimes need a bit of help when then come out, he’ll be ok.’ But then five minutes passed, then ten, then thirty. And things were not ok.

Arthur was flown to our nearest NICU (Wellington, New Zealand) in an incubator and we followed. We could not believe what was happening. Everything felt so surreal – was this actually our life? The NICU was constantly phoning our midwife; Arthur was not doing well. We’d hit morning rush hour traffic, so the last leg of our journey was in a police car.

Arthur waited for us to arrive. He was hooked up to so many cords and wires. The doctors said to us that he was very sick. I found ‘sick’ such an odd term to use. It seemed so ordinary. I kept thinking, ‘make him better then!’ They performed some last tests, ‘just to make sure we aren’t missing anything,’ but they confirmed that Arthur had no brain activity.

The doctors told us that there was nothing that they could do for Arthur, and that if we wanted to see him without all the cords and wires, they could disconnect the machines keeping him alive, but that he would probably leave us very quickly. We held him, sang to him, read him a story, and then all the tubes and wires we removed. He died instantly in our arms.

I can barely remember our time in the NICU – the faces and words are a blur. What is sharp in my mind is Arthur – his little heart fluttering away under his skin, his pink fingers, his red hair – that was a surprise! I can also vividly remember my husband’s face and the grief and disbelief there. One thing that has really stuck with me was the way Arthur was treated with such dignity. He was always in a nappy and swaddled in beautiful, bright wraps. I was helped to wash and dress him, and he was handled with such gentleness, care and love.

We spent a night in the hospital, in a special room on the maternity ward, but far away from the healthy, living babies. We were gently introduced to the concept of ‘memory making’ – prints and casts of his hands and feet were taken for us to keep. After initially turning down the opportunity, a photographer from the charity Heartfelt came and took beautiful photos of us as a family. I felt so proud, even with all the sadness. I am smiling in many of the photographs which feels a bit strange to look back at, but I was still feeling joy, love and pride.

We got to spend a couple of nights with Arthur at home. He slept between us in our bed, and we camped out on the floor of his nursery. We took him down to the beach near our home early one morning as the sun was rising, and he got a bit wet and sandy!

Our home filled with friends, family, food and flowers. Luckily COVID restrictions allowed this to happen otherwise I’m not sure how we would have coped on our own. We had a beautiful celebration of his life and memory. The day was warm and sunny, the flowers bright, the tears flowing – but still lots of laughter.

Being at home in the aftermath without Arthur was surreal and terrible. It almost felt like a bad dream, but the nursery all set up and waiting for him was a harsh reminder. Sometimes I would be sitting on the sofa and I would physically feel Arthur’s absence. My arms ached and my chest felt like it was caving in without him to hold.

It is sometimes hard to think of myself as a mother to Arthur as the marker of being a mother (a baby) isn’t there. I see other Mums pushing prams and I smile politely, but I just want to shout ‘I have a baby too!’ I had to go through all the same physical postpartum challenges – bleeding, sore breasts, hair falling out in handfuls, stretch marks and the weight I’d gained – all without the one thing that would have made it all worthwhile. But I am still a mother to Arthur, and we are still his parents. We made decisions on Arthur’s behalf during his short life that only a parent could make

Arthur had a post-mortem and when we got the results back it showed a normal, healthy baby and no reason for his death. He had just somehow lost blood supply very shortly before his birth, and therefore oxygen. It was hard not having an ‘answer’ but also reassuring in that it means that there is nothing anyone missed, or did wrong, and nothing we need to necessarily worry about for a future pregnancy. I can’t imagine having to carry around the hurt of his death being preventable.

I found the immediate aftermath of Arthur’s birth lonely and isolating. Surely, in 2021, babies don’t die anymore, right? I’ve come to learn that in New Zealand about 600 babies die each year from 20 weeks to 28 days. That’s roughly double the number of deaths we have on our roads, and our government and campaigners spend millions every year on very public campaigns to try and get that number down. But those babies that die are basically invisible. And that silence makes it so much harder for families trying to survive in the wake of the loss of their much loved and wanted baby.

I guess because of our smaller population, I haven’t found much of a baby loss community in New Zealand. Everything seems to be centred around Sands, and while I am sure they are a great charity (their support meetings are currently online due to COVID, and I don’t want to participate that way) I didn’t feel like much of the material resonated with me. It felt old and dated.

Luckily (or more like unluckily) I found a baby loss community in the UK that made me feel less alone. Women my age, using Instagram and blogs to share their stories of loss and heartbreak. I devoured Beth’s heart-breaking story of Clay, and other stories on the Baby Loss Hub, as well as Hannah Sinnott’s experience with her daughter Cora. I read Elle Wright’s book ‘Ask Me His Name’ and found myself agreeing with every word. I listened to podcasts from The Worst Girl Gang Ever. So my question was answered – babies do still die in 2021. Despite this shocking realisation, I was heartened to feel less alone.

I also listened (twice) to a locally produced podcast by Radio NZ called ‘The Unthinkable’, which tells the story of a couple whose experience was all too similar to ours. They live 30 minutes from us, so everything was playing out at the same hospital, and with the same processes and context. They also coped using dark humour, which was something my husband and I often found we turned to. I felt less like I was grieving incorrectly after this. There are no rules when it comes to grief.

Something I found particularly comforting was writing to a friend of my mums, who I discovered after Arthur died had also lost a baby due to cot death in the late 1980s. I have known this person my entire life, and I would never have known that she had experienced such loss and sadness. While I don’t doubt that she thinks about her baby each and every day, it gave me courage to know that I too will be ok (and so will all of you reading this).

When your baby dies, people often say the wrong thing; or even worse, they say nothing at all. I keep telling myself that these people aren’t trying to hurt me, they just don't know what to do or say.

One thing that people often say is that time heals. But grief doesn't get smaller with time. We just learn how to carry it with us. Grief is the price paid for love, and I will never stop loving Arthur, which means I’ll never stop grieving him. It makes me realise that many people around us are carrying so much invisible pain and hurt, and that we must all strive to be kind to one another, as we just don’t know what others have endured.

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