Raising Awareness Of SUDIC

Elliot's mum Andrea has written the following blogpost for Child bereavement UK's website to increase the awareness and understanding of SUDIC - Sudden and Unexpected Death in Infancy and Childhood.

Why we need to speak more openly about SUDIC

by Andrea Kerslake, Founder of Elliot's Footprint

I woke up on the 3 March 2013 to a full day ahead: a football match, tidying up after a sleepover, keeping an eye on my adventurous and cheeky two-year-old, making sure my other children’s homework was done and preparing the garden for some new landscaping after our building works had finally finished. As was usual – a full Sunday.

By the end of that fateful day my world was shattered. Our gorgeous cheeky two-year-old, Elliot (EJ), went for an afternoon sleep and never woke up. No warning, no illness – nothing. We went from organised family chaos to sudden silence, unable to even remotely comprehend what was happening.

My world moved from words like ‘homework’ and ‘making tea’ to ‘unexplained’, ‘SUDIC’ and ‘rare’. I entered a world of Child Death Review information, consultants, police, coroners – I was beyond desperate to get back to my safe, organised chaos family life. 

I was out of my depth in the world I was now in; I was in everyone else’s process, and no one was in mine. There was no help available for going into hospital as a family of five and coming out as a family of  four – just a yellow leaflet.  As the days and weeks went on, I also learned I had to somehow explain and justify why EJ had died, not to the police or coroners, more to some colleagues and friends.

I have been incredibly lucky – which sounds a strange word to use in this context – that I have a truly amazing close family and some unbelievably awesome friends and colleagues, many of whom showed up, sat down and were there – no expectation, no demands – for whatever we may need.

Others, well that was a learning experience. ‘How could Elliot go to sleep and not wake up, that can’t happen?’, ‘Are you sure you didn’t miss anything, maybe a headache, temperature…I can’t understand how you couldn’t not know he was ill?’, ‘It must have been SIDS, I’ve never heard of SUDIC, is that even a thing’? These are some of the comments/questions I had from ‘well-meaning friends and colleagues. I get it, they were also trying to get their own heads around what had happened, but I felt guilty and horrendous enough having to repeatedly justify what had happened and say, ‘yes SUDIC is a ‘thing’. It made my guilt grow deeper; I was the one who put EJ for his sleep, I was with him every moment of that day – so I was convinced I must have missed something.

It took over 19 months to finally get an inquest. The coroner’s ‘best guess’ was that EJ died from a virus that attacked his brain as he slept and, because he was asleep, he had no chance of surviving it as it shut his heart and breathing down before he could develop any symptoms such as a temperature or have a chance to cry with any pain. It took me a long time to accept I wasn’t responsible – the delays in getting the inquest and the disbelief from others that SUDIC just wasn’t a thing made the devastation even more unimaginable.

Even now, when I tell people that EJ died – I always say I have three children – there is a look of disbelief and an ask for more information as they can’t imagine that a child over 12 months can simply go to sleep and never wake up. As one person said to me, ‘Well I could understand it if you said they had cancer or had an accident. That they were three years old and simply died in their sleep, well its odd, isn’t it?’.

Raising the profile and an understanding of SUDIC can help families to feel less isolated, guilty and in a position where they must repeatedly explain why their child has died.  It also helps to get a conversation going so we can learn more about the impact and, crucially, through research, hopefully prevent another family experiencing the devastation of SUDIC.

In partnership with Child Bereavement UK, Elliot's Footprint funds a bereavement support practitioner to support families in West Yorkshire following the death of a child where the death has been sudden and unexpected/unexplained (SUDIC).