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How did we get here? Part 2.

Part Two

On Tuesday 16th November at 6am, we were told that one of William’s pupils was more dilated than the other, so before it was even light outside he was taken for another CT scan. A few hours later news was given to Keith and I that William had suffered additional swelling to his brain and there were signs that he'd suffered a stroke at some point. I remember thinking, isn’t a 45 minute seizure and 2 cardiac arrests enough for this little boy, why a stroke as well? Our precious baby was suffering so much. How could he come out of this ordeal without any harm? I asked the consultant a question, 'If William wakes up, what’s the damage going to be?' She couldn’t be sure but it would be life changing for him, and for all of us.

I needed her to be black and white with me. At this point, it had been 2 ½ days since Will’s seizure, my head hadn’t had a chance to think, to catch up, to understand any of these events. I was running on adrenaline and no sleep, and in all honesty I still had moments when I thought William was going to wake up, and give it 6 months of rehab, be on a scooter, going to nursery and come out of this trauma unharmed. That’s the shock and denial right there!

The consultant said, it would be very unlikely William would recover completely, or that he would manage feeding, learn language, have the ability to see and motor function. The best case scenario is William would be discharged to the ward, rehabilitate there and spend a life in a bed and chair. It was explained to us that we would have to do everything for him for the rest of his life, his brain injury was catastrophic. We spoke about our two other children and the impact it would have on them. It was hard to picture the most energetic one of our 3 boys never climbing trees, riding a bike or playing football with Max and Lewis.

However within a few hours of this conversation it was becoming clear to the doctors that his body was showing signs that his injuries were irreversible, his body wasn't going to fight this battle and win. He was being kept alive by the machines attached to him. He’d suffered so much trauma, his breathing and heart rate was slowing and staff were surrounding him whilst Keith and I sat and watched in shock.

Mid-morning we made calls to our parents and sent a few text messages to our closest friends to let them know that we would be saying goodbye to our baby boy in the next few days. Words no parent should ever have to say. How do you prepare for this?

My parents made the journey from Guildford to London to come and say goodbye to William, to their perfect grandson. They hadn't had enough time with him, none of us had. Keith and I left them alone with William, I don't know what they said to him, but they had some time as grandparents and grandson. As my mum and dad were leaving the hospital, they kissed and hugged me and it felt like they were trying to pass every ounce of courage and strength they had on to me. I was going to need it.

That evening William was transferred from the main ward to a private room and moved from a cot to a bed. After 72 hours we were finally able to lay next to him. As parents the one thing we could do, was to wrap him up in our love and hope that he would go peacefully when the time came. We signed a DNR as we were told by the doctors that his body was weakening, we’d never want him to suffer anymore trauma, just to keep him here for a few more days. It felt far too selfish.

On Wednesday 17th November we spent a short amount of time talking to the palliative care team, and a consultant regarding his post mortem, and then we asked to be left with William. We knew today was the day our baby was going to die.

I asked if I could hold my baby boy? Two nurses helped to navigate all the wires and tubes and placed him delicately on my lap. He was swollen, and very heavy, not like my dinky William was 4 days before. We took photographs, we didn't know if we'd ever look at them again, but we couldn't rewind the clock and take them after he was gone. I talked to him about all the cartoons he liked, our garden and the trampoline he loved during the summer of 2021. I ran my finger over the scar on his right knee that he'd gotten a few months ago after falling over. I told him that he was taking a huge part of my heart with him and to keep it safe until we’d be together again. I promised him that I’d be strong and do everything in life that he’d have wanted to do.

A few hours passed, Keith and I took turns to hold William, to play him cartoons and music on our phones, and then we knew it was time, machines attached to him were constantly making alarm sounds, he was deteriorating. We asked our nurse to find our doctor and consultant. They arrived with tears falling down their faces, they turned the monitor volume to silent and the screens to face them as I couldn't watch the monitor as his heart stopped beating for the last time. They removed all of the life support, the wires and tape that was attached to William... and then we wrapped him up in our arms.

17 minutes was all it took for him to peacefully drift away from me and sleep forever. During those 17 minutes we didn’t cry, we spoke to William, we cuddled and kissed, and stroked his perfect skin. We soaked up every ounce of him that would have to see us through our lifetime. We told him how much everyone loves him. We told him how he completed our family and that we will never be the same again. In the 21 months we had our blue eyed boy, he left the biggest impact on his family’s heart. I don’t think we’ll ever meet a child with the same enthusiasm for life, the same happiness in the simplest of things, or a little boy who loved his parents and 2 brothers in such a way. We were his everything.

On Wednesday 17th November 2021, in a hospital room in London, William Johnston died at 4.17pm. The song Chasing Cars by Snow Patrol kept coming into my head, and I quietly sung to him…’If I lay here, if I just lay here, would you lie with me and just forget the world’.

Thanks for reading,

Hannah x

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Sudden Unexplained Death In Childhood

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