Our Three-Year-Old Died This Time Last Year. We Still Don’t Know Why

Emily and her son Alexander, who passed away unexpectedly last year.Emily and her son Alexander, who passed away unexpectedly last year.

In My Story, readers share their unique, life-changing experiences. This week we hear from Emily Cooper, who’s 34 and based in Lancaster.

Alexander was a very placid boy, one of those totally joyous toddlers. Anybody that looked after him used to tell us what a lovely, easy child he was. His three loves were: any and all vehicles, but especially cars (we have about a million of them in the house), his Peter Rabbit teddy, and ice cream. He always wanted ice cream.

It was just a normal Christmas last year. He had a bit of diarrhoea in the morning when we first woke up, which was really random because he didn’t have a bad tummy the day before. But he seemed fine in himself – he came down and opened all of our presents, including his own. He was so excited to open everything and ate all of his Christmas dinner.

He was dancing to The Masked Singer with his younger brother Freddie that night and I’ve got videos of him talking to my husband Darren about his Christmas presents. 

On Boxing Day, he was a bit tired. He came and snuggled in bed with me that morning, which he never normally did. I could tell he probably wasn’t feeling himself – but he didn’t have a temperature or anything like that. 

Over the course of the day he vomited a couple of times so we tried to put him down for a nap and he vomited in bed, so we got him up again. He said he felt better after being sick again – he was still drinking and eating, so we just assumed it would be out of his system soon. I went out for a walk with Freddie because I wanted to get him away from the germs, really.

While I was out, Alexander had a fit at home and never regained consciousness. He went into cardiac arrest and Darren had to do CPR. The ambulance arrived and they managed to get him going again – but his heart kept stopping.

I was 26 weeks pregnant with our third child at the time. I came home to a police van outside my house. I hadn’t even realised anything was wrong until I got home because I didn’t look at my phone. It was on silent. It’s never been on silent since.

My first thought was Darren and not Alexander. I thought he had been attacked – or he’d died. I left Freddie, our then two-year-old, at home with our neighbour and my mum. When I got to hospital, Darren was already there with Alexander, who was not very well but was ‘stable’ – as in, his heart was going. I went to see him and he went into cardiac arrest while I was in there. They kept doing CPR but they just couldn’t revive him.

He’d had a couple of febrile seizures as a toddler – as did I, as a child – but otherwise developed normally and was healthy, happy and much-loved. There was no warning and it was completely devastating. I cannot describe the pain of having to sit helplessly watching as staff desperately try and save your son, to no avail. It is something that nobody should ever have to go through.

In the days and weeks after, we didn’t tell his brother Freddie what had happened. He asked where Alexander was a couple of times and he would burst into his room expecting him to be in there. Eventually he stopped looking and asking. The empty bed was awful. 

Emily with Alexander (in the Batman hat) and Freddie.Emily with Alexander (in the Batman hat) and Freddie.

All we said was: “Alexander’s gone, he’s not here.” We didn’t really elaborate beyond that and he’s not asked us since. We wanted to be led by him – he’s so young and doesn’t have the language skills for us to be able to explain about death just yet. 

We show him lots of videos and pictures because we don’t want him to forget him – and he doesn’t, he knows exactly who he is. 

We always say goodnight to Alexander, or his picture. We take Freddie to see Alexander’s ‘stone’. We will explain at some point, but we’ve not had to do that just yet, which has been a relief. If a child gets hit by a bus or is in a freak accident, it might be a bit easier to explain. But to say: “Well, he just died.” It would be difficult for an older child to understand it, let alone someone so young.

I’d never heard of sudden unexplained death in childhood – or SUDC – before. I’d heard of cot death (also called sudden infant death syndrome, or SIDS) and although they still don’t really know why children die in that way, they at least know some things to try and prevent it. But I had never heard of the case of an older child just dropping dead.

I hate having to put that out there for parents to hear, because it’s your worst nightmare. I hate having to raise awareness of it because I don’t want to terrify everybody, but at the same time we’re only going to get more research done if we talk about it.

The postmortem process took almost eight months – it’s been horrific how long it’s taken. They had to take his whole brain and send it off to a specialist. But there are so few experts in the country that can look and examine the brain in the detail that’s needed for a child. 

When the postmortem came back, they told us he had a hippocampal formation maldevelopment, which is sometimes associated with sudden unexplained death in childhood (SUDC). He also had heart scarring on one side they couldn’t explain, which might’ve been from a past seizure or virus. There was also a possible incidental find regarding a bit of genetic information.

But they couldn’t tell us how much each of these things contributed to his death, individually or collectively. There just isn’t enough known about SUDC or the issues that were found.

All I want to know is: what do you think, in your opinion, caused the heart scarring? And are the other kids at risk? We’ve already had heart screening – we’ve all had an echocardiogram, and an ECG, and all of those have come back normal. So what next? Is that it? You’re just left hanging and it’s torture. We’re a year on and we’ve only really got the basics.

You have all this uncertainty, coupled with the trauma of what happened, and then the wait – and when you do finally get these partial answers, you’re banging your head against a brick wall trying to get experts to speak to you. 

Horrifically, we are lucky because so many SUDC families get literally nothing from a postmortem process. They go through all that – and they have to allow somebody to take all those precious things from their children – and they get nothing back. 

The charity SUDC UK has been phenomenal in supporting us and pointing us in the direction of people who can help. They sent me a tweet in early January and I realised for the first time: Oh god, we’re not alone. We had nothing really in the way of information in the aftermath of Alexander’s death – even from a medical perspective, for them to go through with us. What did they find? What didn’t they find? What did they test for in those moments after he died?

We were just left with our dead son, and with a nurse. You get given a leaflet on how to cope after your child’s died and you get told about a couple of charities, but then you just get on with it. 

Emily and her son AlexanderEmily and her son Alexander

We were fortunate that in our area we have a SUDC nurse – she’s been absolutely phenomenal and I don’t know what we would’ve done without her. She’s acted as the intermediary between us, the hospital, the police and so on. 

SUDC will potentially be discussed in parliament in January. If they do, I just hope they push for more awareness-raising of the issue, and for there to always be a SUDC nurse in every area, to advocate for families.

But the main thing is we need more research. There are so few papers on this – the numbers are staggering for how much research there is into SIDS and the reduction of risk, but for SUDC there’s a handful. Yet it’s the fourth leading category of death in children aged one to four.

The first anniversary of Alexander’s death is coming up and we’ve made some changes to how we celebrate Christmas to try and get through it. Really, it’s just a case of trying to survive it. I’m sure on the day it’ll just be a case where we’ll relive it, minute by minute. 

It feels like an eternity since we saw him, but it also feels like yesterday that we last heard him or cuddled him. It’s really bizarre to me that it’s been a year. The passing of time is really strange. But we’re really just trying to exist.

Some families do something to mark the anniversary, but I don’t want to mark his death. I want to mark his life. That might change as the years go on. A lot of families we’re in touch with say it changes over time. But it’s likely this one is going to be the worst, so we’re just trying to make it pass as quickly and painlessly as possible. 

For more information or support on SUDC, please visit sudc.org.uk. Emily was interviewed by Natasha Hinde and her answers were edited for length and clarity. To take part in HuffPost UK’s My Story series, email uklife@huffpost.com.

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