May 26, 2022

A world without William.

6 months ago we got in a taxi home from the Evelina Hospital, we’d been there for 4 days. The longest and shortest 4 days of my life, but above all, the 4 days that would change our lives forever and affect the way we live… in a world without William.

Shortly after William was pronounced dead I was able to cuddle him the way I always had before, without wires attached to him and without the tube in his mouth. He was still warm as I pressed his body into mine, but I didn’t know how long that would last. Imagine holding your dead child? And then having to leave him in a room and close the door. He was in a bed, in his pyjamas and with a teddy tucked under his arm, so still and so perfect looking. By the reception to the PICU we were given a leaflet by the consultant titled ‘When a child dies’. Well, that was like receiving a bullet to the chest…. Welcome to the worst club in the world! And here’s your guidebook!

Our consultant explained to us, ‘ There is a formal process that happens after a child dies. This is known as a child death review It's where all the clinicians involved in William’s care write a report and then meet to discuss if there is anything they can learn that can help to prevent future deaths and improve procedures in the hospital'. At this stage we didn’t have a cause of death for William, the hospital hoped that genetic tests, metabolic tests and the post mortem might shed light on why a healthy baby boy suddenly died.

After being given that information we left the hospital. I managed the taxi ride home without throwing up, there were quite a few times I thought I was going to have to stop the car. We arrived outside our house, the last time we were here, the ambulance was on our drive and William was inside it suffering a cardiac arrest. It’s like I could see Keith and I stood there, waiting for the paramedics to come out and give us news.

We walked into our dark house around 9pm, I put the kitchen light on and there it was, the high chair, as if a spotlight was on it, shining brightly at me. The kitchen floor… where William had his seizure and the 4 paramedics tried to help him. I walked over to the door that connects our kitchen to our garage and opened it, there was William’s buggy and by the wheel a piece of grey plastic on the floor that I remembered seeing on the Saturday night. Why did I need to pick that up and put it in the bin within moments of arriving home? Maybe a painful reminder of something that had been in the paramedic’s bag?

We walked into the playroom and put the light on. My mum had put William’s toy cars on the window sill where he’d started to put them over the last few weeks. William had also loved the 'Galt' coloured pegs and the wooden container they came in, only 3 of the 4 pegs were there though. I started looking for the missing red peg but couldn’t find it. (We turned the sofa upside down 5 days later and it fell out).

Keith asked me if I wanted to sit in our lounge, I felt too exposed in what felt like a big room, I said shall we watch tv in bed? We didn’t know what to do. So we got into bed and put on a cooking programme, for weeks and weeks that’s all we watched, it was safe TV. We were both traumatised, shocked, crushed and in denial. My body wasn’t feeling a thing, as if it was frozen. I think my brain knew to put me in the safest place it could which was numbness. We got a few hours sleep, we hadn’t really slept for 4 days. I remember waking with a jolt around 2am thinking I’d been prodded by a doctor wanting to give me an update on William, and then that heart breaking reality kicked me in the stomach. I put another cooking programme on in the background, I couldn’t be alone with the narrative in my head. That William really was gone.

Thursday 18th November, the day we had to break 2 little boys hearts.

Keith and I spoke about what to tell the boys. How to tell Max and Lewis that their baby brother didn’t come home? Where do we tell them he’s gone?

Keith googled it, it was clear that you had to say died/is dead. Do not say gone to sleep, do not say gone away, you have to tell them the facts. We’d had experience in August 2020 of telling the boys that their grandad had passed away, so we had a rough idea what their brains could cope with and how they’d process it. At around 9:15am there was a knock on the door, my mum and dad had brought Max and Lewis to us. My parents stood there with sunglasses on, probably hiding their tired and puffy eyes from the tears they'd shed. I can’t imagine what it was like for them to be on our doorstep looking at their daughter and knowing what she was about to do. (One day I will ask them questions, I have so many but I’m not ready to open those wounds). Max and Lewis came in and looked around the empty playroom, they said ‘Where's William? Is he better?’

We all sat on the sofa and Keith put Lewis on his lap and I took Max on mine. Keith, with such courage explained to the boys that the doctors in London tried to make William better, but he was too poorly and he died yesterday. I looked at their blank little faces, I could almost see behind their eyes into their brains as they were attempting to make sense of what we‘d told them. Max started crying, a few tears and then he flung his arms around my neck and sobbed. Lewis said to us, ‘you can have another baby, maybe it would be a girl or twins’ (kids are so unpredictable) but those suggestions made sense to him. He’s 5, and at that age as parents, we teach our children that if something is broken, we can fix it or if something is lost we can replace it. I have quite a few friends who are primary school teachers and they have helped me to understand Max and Lewis' way of thinking. 10 minutes later Max asked if he was going to school now as it was pyjama day in his class. We were surprised that they would want to go to school, but 6 months on I know that’s where they’re happiest, with their friends, their teachers and in a routine.

We told them they could go into school tomorrow, but today we’d go to the park. Once we arrived I sat on a bench watching Max and Lewis play. No buggy next to me, no toddler that I needed to stand behind in case he fell or needed help. No baby to push on the swing, just me and Keith on a park bench. And that’s where I sent text messages to our world, to let them know that William was gone. I typed, ‘Our beautiful and brave baby boy William passed away at 4:17pm yesterday in the arms of his mummy and daddy’. I then spoke on the phone to the head teacher from the boy’s school, they were going to draft an email to the parents of the children in the boys classes to let them know what had happened and I needed to approve it before it was sent out.

Somehow we made it to 7pm, put Max and Lewis to bed and then it was time for Keith and I to let the wider world know. I couldn’t have anyone asking me on the school run 'Where’s William? How’s your week been?' Imagine. Keith wrote the most perfectly heart-breaking announcement that I could put on Facebook and Instagram, and that evening I pressed share. The messages poured in from my insta friends and from people I’d never ever spoken to, and at that point it hit me how utterly devastating and shocking this was to everyone. I kept saying to Keith ‘our baby died’, as if the information wouldn’t go in past my short term memory and stay in my long term filing cabinet.

I hadn’t really thought about myself during all of this, it had been about William, what he would miss out on, how he’d never made his mark on the world and what our perfect baby went through. How he lost his life. It was only the next day when a friend said to me about my trauma, potentially PTSD that I sat there for a moment and started to think about what I’d seen that week, what I’d felt and what I’d lost. In most people’s lifetimes they will never experience losing a child (thank goodness). We had to find a way to survive the loss of William.

Amongst all of this heart break I know that I want to smile again, to feel joy again and I want to make Max and Lewis’ life as wonderful as I possibly can. The last thing I want is to overhear the boys saying to their friends as teenagers ‘my mum is always sad, she's always crying’. These two little boys don’t realise how much they help us every day. They get us up in the mornings, on the school run and keep us busy. They’re everything we need to help us navigate through the fog.

Our home, where William spent 21 months was his favourite place, the garden was like Disneyland to him. I want to continue to make our home a happy and inviting place for all of our friends and family. There will always be photos up of our bunny, and we will always want to share them and talk about him. For the rest of my life, when I’m asked how many children I have, the answer will always be 3, and I’m proud to say 3.

Thanks for reading,

Hannah x

Website recommendations

Sudden Unexplained Death In Childhood

www.sudc.org

Child Bereavement UK

www.childbereavementuk.org

NHS Website

www.nhs.uk/conditions/febrile-seizures

Winston's Wish

www.winstonswish.org

SIDS