Sudden Unexplained Death in Childhood

Tim Farron Excerpts

Tuesday 17th January 2023 Westminster Hall

[Tim Farron (Westmorland and Lonsdale) (LD)]

It is a pleasure to serve under your chairmanship, Mr Twigg, and a pleasure to follow the right hon. Member for Spelthorne (Kwasi Kwarteng), who made a very moving and thoughtful speech. I especially congratulate him on securing this really important debate.

SUDC is an unimaginable tragedy to strike any family. We are here because people in our communities have reached out to us to share their experiences with us. I know we all feel that it is a huge responsibility and an honour to share their experiences.

I spoke last night and previously to my constituent Charlotte and her husband Andy regarding their little son Wilfred, who was two years and 10 months old when he died a little over a year ago. Charlotte and Andy refer to Wilfred as a

“vibrant, energetic little boy who had a vivacious and fearless lust for life.”

She goes on to say:

“The shock that reverberates into every aspect of your life when your child dies unexpectedly and suddenly is unimaginable”.

Unimaginable it is to those of us who have not personally experienced that tragedy. As I seek to honour Wilfred, perhaps the best thing that I can do is speak briefly about actions that could spare other families from experiencing the grief and tragedy with which Wilfred’s family continue to live.

The challenges are what to do with the evidence and what to do about the lack of evidence. Those are the two things that it would be good to consider. Let me first turn to what to do about the evidence. Wilfred passed away at two years and 10 months. At 10 months old, he suffered his first febrile seizure. He was never referred for further investigations to ascertain the cause or to ascertain whether a febrile seizure could lead to anything more dangerous. Wilfred had his sixth febrile seizure, which led to a cardiac arrest, and he passed away just a few days later.

Research by the US branch of the charity Sudden Unexplained Deaths in Childhood shows that roughly a third of sudden unexplained child deaths happen to children with a history of febrile seizures. So they are not totally unexplained, are they? At least some of them are not. However, febrile seizures are mostly not treated as serious or potentially serious. Most NHS trusts do not have a pathway to deal with children who have suffered a febrile seizure, and that surely must be addressed urgently. Febrile seizures must be seen as a red flag that all NHS providers should be aware of, and they should be equipped to act accordingly.

I want also to refer to something that tends to affect not very young children, but young people who are still minors: deaths caused by undiagnosed heart conditions. In particular, I want to refer to the work of CRY—Cardiac Risk in the Young—which does tremendous work in screening young people, particularly those who have any kind of family history but even those who do not, to see whether there is a potential risk. Thousands of people have been assessed by Cardiac Risk in the Young, which is a wonderful charity that works across the north-west and further—indeed, it has done sessions in Kendal. I encourage the Minister to look into how we can screen young people, particularly if there is any family history, to ensure that we do not lose them to undiagnosed heart conditions.

That is what to do with the evidence. What do we do about the lack of evidence? Simply, for the children we lose to sudden unexplained death, it is indeed totally unexplained: there are no clues. We ask collectively today that the Government prioritise scientific research into sudden unexplained deaths among children, potential causes and modifiable risk factors. We also ask that the Government and the NHS prioritise medical education to increase awareness.

[Andy Slaughter (Hammersmith) (Lab)]

I agree with what the hon. Gentleman said. I am here because a constituent told me about the tragic death of her two-year-old nephew in 2021. I am educating myself, with the help of SUDC UK, but it is difficult because there is so little debate, publicity and awareness. I hope that this well-attended debate will mean that research and education is forthcoming. It is a very rare but absolutely devastating condition.

[Tim Farron]

I agree with the hon. Gentleman.

In memory of Wilfred, in honouring his family, and as we remember all those who have tragically died and we seek to support their loved ones, we ask that the Government take practical steps to help us to tackle the horror of sudden unexplained deaths among children.

I spoke to another family—I will not name them—who talked about the loss of their child not so long ago. The mother said to me:

“It clouds everything you do, feel and breathe. I hate that it happened to him and not me. I will never not be able to see him in A&E, thinking this can’t be happening, he is healthy, and I left him a couple of hours ago absolutely fine.”

There is a reason why it is such an uncomfortable issue, but it is important to grasp uncomfortable issues, not only in honour of the memory of Wilfred and everybody else who has passed away and to honour their families, but to prevent any other families from going through the same thing in future.