On Saturday 13th November 2021 our lives changed forever. The youngest of my three sons, William, aged 21 months, had a minor temperature that day, ranging from 37-38 degrees, but he was still happy, playing and full of energy. Late afternoon I popped him in his high chair with his dinner, I went around the corner to the fridge in our kitchen and when I returned William was having his first febrile seizure. I called 999 and the paramedics arrived within 6 minutes, but it took 45 minutes for his fitting to stop. After what felt like the longest hour of my life, I stroked William’s arm and told him Mummy was here. He didn’t respond, but the paramedics reassured me that this wasn’t unusual due to the length of his seizure and the diazepam that was given to him.
I stood helplessly and watched as the medical team slowly and carefully settled William into the ambulance that was parked on our driveway. Then all of a sudden the pace changed; it became urgent and noisy and the doors to the back of the vehicle were closed.
Ten agonising minutes later, one of the paramedics came out sweating and told my husband and me that William had suffered a cardiac arrest. I collapsed onto the floor; this couldn’t be happening to our baby. They left immediately for the local hospital, and we followed behind in a doctor’s car. I won’t ever forget that journey. William’s ambulance made an emergency stop on the side of the road; we had no idea if he was alive or dead. Once we arrived at our local hospital we were taken into a family room, both of us sobbing as staff introduced themselves to us, but the only thing we wanted to know: was William alive? The answer was ‘Yes, but he’d suffered a second cardiac arrest on his journey to the hospital, his heart had stopped beating for 11 minutes’. In less than 2 hours we went from playing with William at home, to him fighting for his life and needing urgent medical care.
We were taken into resus where William was lying on a bed. He was intubated and ventilated, and kept in a neuroprotective state to give his body a chance to recover from the trauma. That evening we were transferred to a London Paediatric Intensive Care Unit. Consultants and nurses gathered William’s medical history from us, but other than having his vaccinations he’d never been to see the GP before.
36 hours after William’s seizure he had an EEG carried out by a neurologist to measure his brain activity and, that evening, any hope we had clung onto was shattered. We were given the heartbreaking news that William’s brain injury from his seizure and cardiac arrests was catastrophic and irreversible. William was going to die.
On Wednesday 17th November 2021 William passed away in the arms of his mummy and daddy. 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?’.
The following day we had to break 2 little boys’ hearts. We had to tell our sons Max and Lewis that their baby brother was gone, that they weren’t going to see him again and shatter their idyllic childhood. Nothing can prepare you for this.
Three weeks after William died, still with no answers, no explanation and no understanding why this happened to a perfectly healthy toddler, our death review nurse called me to introduce herself. She knew about William’s case and how rare it was, and she asked me if I’d heard of ‘Sudden Unexplained Death in Childhood’ (SUDC). I hadn’t, but straight after the call, I typed it into my google search bar and I read everything I could find about it. How did I not know about this? We are educated in pregnancy and after birth about SIDS (Sudden Infant Death Syndrome) but I’ve had 3 babies and I didn’t know that SUDC was a risk – that toddlers, children and teenagers can die suddenly with no explanation. I felt extremely naïve at this point.
The post-mortem hung over our heads for 5 months, but we weren’t surprised that the report came back providing no further information as to what caused William’s seizure. I knew in my heart that it wouldn’t give us the answers we desperately wanted. After a thorough investigation it confirmed William’s death fell into the category of ‘Sudden Unexplained Death in Childhood’ and the statistic that blew my mind was that there are more young unexplained childhood deaths (at 1-9 years of age) than deaths due to traffic accidents, fires or drowning. Even writing this down, it stuns me that as parents we are aware of so many risks, that we teach our children to be careful when crossing the road, or playing near water, but there isn’t enough awareness or information given to us around children dying suddenly and without any explanation.
Since coming to terms with this news, I have dedicated time to raising awareness of SUDC and our story. I have spoken on podcasts and used the power of Instagram to ask my followers to share our story and help me to support the SUDC UK charity. The latest research study that is getting off the ground in New York is looking at the correlation between febrile seizures and SUDC. The data shows that 1/3 of children whose deaths fall into the SUDC category have had a history of febrile seizures. They’re at the beginning stages of this research but it could be vital in the future to hopefully make SUDC predictable and preventable.
If you’re reading this and have lost a child, I am so sorry that you’re going through this. You’re not alone! The unthinkable has happened to you and your family; you’re surviving the loss of your child. Take one day at a time, remember no two days are the same and try to do what’s best for you. Grief is personal and unique, there is no right or wrong way to cope.
One of my biggest lifelines has been the baby/child loss community. When I started to share our news on social media, I received messages from families going through the same journey as me. We’ve chatted, gone for walks and supported each other. These mums gave me information about charities that are available to support families like ours. It’s a community that no parent wants to be part of, but you’re welcomed in with so much love, kindness and compassion during your most fragile time. If you’re feeling isolated and that no one understands how you’re feeling, I would urge you to look for support here.
Over the past year I’ve witnessed that tomorrow isn’t a promise, and that anything can happen to you and your family. I’ve learned that no matter how fragile you are feeling, you have this inner warrior strength that gets you through the day when you don’t think it’s possible. I am learning that there are still happy moments in life. We try to find good bits in every day, whether it’s watching Max and Lewis play football or seeing a flower burst into life in the garden. Joy can be found again, it’s in a different way sometimes, but it is still there.
The biggest lesson I’ve learned is how to parent my 3 boys. I don’t get to do it in the conventional way with William, but by sharing photos and memories and talking about him the world will not forget about our son.
William wasn’t here for a long time, but he was here for a good time. He’ll always be 21 months old. He’ll be remembered as the little boy we called bunny, with the ocean-blue eyes and the huge open-mouth smile. I’ll always remember him with a scar on his right knee, wearing his dungarees and his little green shoes. The baby who made the biggest impact on our lives and taught us to love in a way we didn’t know was possible. Forever my angel bunny.
Hannah x
Instagram~ @Hannah__johnston
My blog- www.forevermissingapiece.com
For more information or to support SUDC-https://sudc.org.uk/
Information about febrile seizures – http://www.nhs.uk/conditions/febrile-seizures/
Elle Wright is a wife, mother, author and blogger. After the death of her son, Teddy, at three days old, Elle started writing to navigate her new life and as a way to feel purpose again. Her Feathering The Empty Nest blog is a way of finding light in darkness, positivity in times of desperation and, hopefully, making a few people laugh along the way.
I am so so sorry to read of your tragic loss. I can’t imagine the heartbreak you have been through. Thank you for raising awareness of SUDC.. I had never heard of it either.