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How did we get here - Part 1.

Part one

On Saturday 13th November 2021 our life changed forever. It started off as a pretty normal day. William was slightly under par, I thought a cold was on its way. He had a slight temperature, ranging from 37-38 degrees, but seemed ok in himself. I have videos of him climbing on chairs, playing with his brothers and generally happy during that day. In the afternoon, he napped like usual, and then we headed out to pick Max up from a play date at 3.50pm.

At 4.20pm I popped William in his highchair with some pizza and his beaker of water. He ate all of his food and was drinking plenty. I walked around the corner of our kitchen to the freezer, and quite literally my life changed forever. As I returned to Will, he was slumped to the right side. I initially thought he was choking, but as I tried to unstrap him from his high chair I could see that his eyes had rolled up and back. (At this point I remembered I had read a post on Instagram a few hours before about a toddler who had suffered a febrile seizure). I held Will in my arms, knelt on the kitchen floor and dialled 999. There was nothing calm about this call, I was crying and terrified. All 3 of my children were well and healthy, with no medical complications, I’d never called for an ambulance before. Max my eldest (6 ½ years old) was with me, I remember wanting to protect him from seeing what was happening to William and how distressed I was becoming. The operator told me the ambulance was 2 minutes away. I sent Max to open the garage door that connected to the kitchen where I was with William, then go to the end of the drive and look for the ambulance. I didn’t want him to remember this. The operator stayed on the phone with me until the paramedics arrived. My call lasted 5 minutes 56 seconds in total, they couldn't have arrived any sooner.

Two paramedics walked through the door and if I’m honest, I breathed a sigh of relief, they were going to give William medication and oxygen and he was going to be fine…of course he was! I stepped away from William to give them space to work, Max hugged me, he said to me ‘William is going to be OK mummy, the doctors are here’. In that moment I couldn't believe his level of maturity and comfort for his mother. I am so proud of him and always will be.

Within 5 minutes, another paramedic arrived with 2 policemen, I was fearful that they thought I could have harmed my baby, but they explained that they support and travel with some of the paramedics on the weekends. One of them sat with Max in the playroom and chatted to him, the second policeman stayed with me, he was incredibly kind, and suggested I called my husband. It was 5pm and I knew Keith wouldn’t be back home for another 30 minutes. I didn’t want him driving and receiving this news, however he was keen for me to call so I did. Next I called my parents, they’d taken Lewis (5 years old) to the beach and were 10 minutes from our house. When they arrived, I can’t remember much, but I was broken, I didn’t have any idea of the time but I knew this seizure was lasting awhile.

Our happy, beautiful and perfect 21 month old baby suffered a 45 minute febrile seizure (tonic clonic) which required 2 doses of diazepam to stop the convulsions at home. We finally had a moment to breathe when the paramedics said ‘it’s stopped’, so they packed up their equipment, ready to leave for the hospital. Will was on the stretcher in our kitchen, I asked if I could touch him? I stroked his arm and told him mummy was here. The paramedic said we’ve given him medicine and he’s going to be exhausted, like he’s run 3 marathons so don’t expect him to respond to you. I was asked to get some bits for William, his beaker, his red medical record book, pyjamas and his nappy bag. My mum did all this, I wasn’t in any state to do anything. I stood in our garage and watched the team with caution get our baby onto the ambulance which was on our driveway, they sorted out all the equipment whilst ensuring he was stable…. Then the pace of the paramedics changed, it became urgent, the doors to the back of the vehicle closed right before my eyes. What now? What was happening?

Really it was the start of every parent’s worst nightmare. Keith arrived home at this point, we stood there waiting for news. A paramedic emerged from the ambulance 10 minutes later, he was sweating and told me and my husband that William had suffered a cardiac arrest, (bradycardia) he was alive but they needed to leave immediately. My legs gave way and I dropped to the floor, I wasn’t taking this in, an hour ago our child was conscious and eating his dinner! The two policemen drove us in their car as we weren’t allowed in the ambulance, there were 3 paramedics with William trying to keep him stable. On the way to the hospital, we saw an ambulance ahead, and it had stopped on the side of the road, I remember thinking, is that William's ambulance, why didn't I write down the registration plate? The policemen tried to reassure us that wires might have come loose on William or they just needed to check something. I was looking down at my lap and thinking I’m about to be sick.

The driver got out of our car and walked around to the stationary ambulance, we heard him speak into his radio and say to the policeman with us ‘is your ear piece in?’…. that was it, we assumed our baby boy was gone and we were going to be told that as soon as we arrived at the hospital. What seemed like an eternity was about 20 minutes when the ambulance set off again and we followed. As William’s parents we didn’t know if he was dead or alive as we arrived at the hospital. We were taken into the family room straight away and told William is alive. We both yelled out, held each other and cried with relief.

We found out William had suffered a second cardiac arrest in the ambulance, known as asystole which is commonly referred to as 'flatline', the most serious of cardiac arrests, his heart stopped beating for 11 minutes. The paramedics didn’t give up on our baby boy, they administered 2 doses of adrenaline and brought him back to life, he was taken to the high dependency department in our local hospital’s A&E.

Keith and I walked into the room where William was lying, I stood there counting the number of doctors and nurses, there were 7 around William’s bed and 3 others taking notes. The paediatric consultant came and introduced herself to us, she said ‘we need to get a CT scan of William’s head and then he will be transferred to a hospital with a children’s intensive care unit, its likely to be either St George’s or The Evelina’. I looked at her and said ‘what do you mean intensive care?’, so much had happened in 2 hours, I couldn’t keep up, let alone process what was happening now. The whole of my body was physically shaking, it wouldn’t stop. The CT scan showed that there was no acute bleeding to William’s brain, so this determined the hospital he would be going to.

We were transferred by a specialist ambulance retrieval team a few hours later to The Evelina Children's Hospital in London. Our little boy had at least 1 nurse with him at all times and had so many wires all over his fragile body. There were machines surrounding him, monitors with numbers and graphs on the screens, all making beeping sounds that made no sense to me. Medicines that are hard to pronounce being administered, he was intubated and on a ventilator, so small, so still and so lifeless. This is what hell looked like. William was to be kept in a heavily sedated state (neuroprotection) to give his brain a chance to recover from the recent trauma. We sat with him and prayed for a miracle. Consultants asked us questions, his medical history etc, but they couldn’t get to the bottom of this, what was wrong with our baby? Why did this happen to him?

We spent Sunday sat by his bed, surrounded by other children in the PICU. The doctor told us he needed an MRI scan and a lumbar puncture, but there wasn’t a time slot for him today, so this would hopefully happen tomorrow. We would step away from the PICU every so often, to stretch our legs and walk the corridors of the hospital. Sunday was our most hopeful day, probably because we were beyond grateful that William was still alive and because further investigations and scans hadn't taken place yet. At 5pm we finally walked along the Southbank to go and get something to eat. I looked at families, and friends chatting and laughing, we didn’t fit in here, we were silent, and numb and broken. I wanted to say to people, ‘look over there, that building is a hospital with really sick people in it, how can you be on the London Eye, or going to the Sea Life Centre?’

First thing on Monday 15th November a Neurologist came and introduced herself to us, she explained that she was going to paste 30 small metal discs onto William’s head and carry out an EEG. This is to look at the brain activity and detect any abnormalities. At one point I was asked to get as close to Will as possible and talk to him. I remember thinking, he's going to know its me, he's going to know its mummy and respond. We were told that a report had to be written up and then they’d come and chat to us later. The MRI and lumbar puncture that had been spoken about yesterday was put on hold. (Maybe because the results of the EEG were obvious to them, that further tests weren’t required at this stage).

I can remember 5.30pm so clearly, we were sat by William’s bed, our consultant knelt down next to us and said we have the EEG results. She told us that there was a lot damage, that damaged brain cells don’t regenerate like skin cells do, we tried to remain hopeful, but very quickly that hope turned into despair when I bluntly asked the consultant, could William die? Behind her mask she replied one word 'yes'. My face mask started to feel wet, tears were streaming down my face. That conversation and her eye contact is ingrained in my mind. It won’t ever leave me. I needed some air, so I went back to our accommodation room in the hospital and thought, I need to speak to someone. I couldn't call my parents as they had Max and Lewis at home, so I called my brother. I can’t remember the whole conversation but I know he tried to remain positive and tell me William is a fighter. I think we both sat on the phone crying. Weeks after William died he said to me I still had faith at this point, I had to, how could I think that my nephew wasn’t going to make it?.

Part two can be found on the blog page of my website.

Thanks for reading,

Hannah x

Website recommendations

Sudden Unexplained Death In Childhood

Evelina Hospital

Lullaby Trust

Child Bereavement UK

NHS Website

Winston's Wish

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