SEIZURES AND SUDC

There is an association between seizures and some children affected by SUDC

 

Sudden Unexplained Death in Childhood is a category of death and not a single cause. This means that there are probably many reasons why and how these children are dying. Over the last 20 years, an association was identified between febrile seizures and SUDC, with approximately one third of affected children having a history of febrile seizures.

Post mortem investigations are limited because they cannot detect functional events like heart rhythm changes or seizures and most SUDC deaths are unwitnessed. This makes it very difficult to understand whether a seizure occurred around the time of death of any child affected by SUDC.

In January 2024, an SUDC UK-funded publication in Neurology from the SUDCRRC at NYU Langone Health revealed analysis of audio-visual recordings in seven toddlers who tragically died unexplained sudden deaths. Most had no medical history of seizures, yet most of the recordings showed seizure activity close to the time of death. The researchers say that this evidence strongly implicates that the deaths were related to convulsions, suggesting that seizures may play a significant role in these unexpected deaths.

SUDC UK understands that this information may be triggering, particularly for SUDC-bereaved families. Please know that we are here in understanding and support. Please reach out to your local support system or call the Samaritans on 116 123 if you ever feel you need urgent help.

Nikki Speed, CEO SUDC UK shares “Many families including my own have spent years, decades even, with absolutely no idea why or how their seemingly healthy child died suddenly. We may never know for certain. However, SUDC UK is proud to have funded this new research – it takes an important step forward in the search for answers. Could seizures have played a role in many SUDC deaths, even those where there was no medical history? And if they did, how exactly did they contribute when they are usually harmless?

SUDC UK will continue to do all we can to support and encourage comprehensive data collection on SUDC cases to further understanding. We will also use this new information to ask the Government to support significant investment in excellent child death review and in unexpected child death research to save lives.

We are thinking of all SUDC-bereaved families who are digesting this new information and we are here in understanding and support.”

Please click here to watch a video sharing a family’s story and this new research. 

FAQs

What is a febrile seizure? – A febrile seizure is a seizure (sometimes known as a ‘fit’) that can happen when a child has a temperature. The NHS website summarises information on febrile seizures.

Should I be worried if my child has a febrile seizure? Febrile seizures are common and many children (1 in 20-50) experience a febrile seizure. They are unlikely to harm your child or cause long-term effects. SUDC is rare (1 in 100,000) and the association between febrile seizures and SUDC is poorly understood. We do understand that seizures can feel scary and worrying but we do not intend to cause alarm, rather to raise awareness that we urgently need more research to better understand SUDC. For further information on febrile seizure management please see the speak to your GP or read the NICE Guidelines.

What evidence is there of this association between seizures and SUDC? – The evidence is summarised in a 2023 systematic review publication and supported by recent NCMD population data analysis in England as well as several child death registries.

What is the SUDCRRC? To learn more about the largest global database of SUDC cases, the SUDC Registry and Research Collaborative (SUDCRRC) at NYU Langone Health or to contact the authors of the January 2024 publication, please visit www.sudcrrc.org

What about siblings affected by SUDC? – Please see the SUDC Foundation medical resources and the information below about monitors. Please contact us if you need support.

How can I contribute to research? Please donate here or if you are an affected family interested in learning about opportunities to support projects or participate in research, please contact us.

Monitors for Children

For current national guidance and opinion on the general use of monitors, please see this information from the MHRA regulators and discuss monitors with your GP or paediatrician.

Help and guidance

Please contact us for  information or support regarding SUDC. If you are a family member registered with SUDC UK, please remember the online SUDC Foundation support groups and SUDC Mighty Network are also available as a resource. As previously mentioned, SUDC UK understands that this information may be triggering, particularly for SUDC-bereaved families. Please know that we are here in understanding and support and feel free to contact nikki@sudc.org.uk to arrange a call or discuss SUDC over email. Please reach out to your local support system or call the Samaritans on 116 123 if you ever feel you need urgent help.

For further medical information concerning febrile seizures we recommend you speak with your GP or paediatrician.

If you would like to learn more about national guidelines or scientific research SUDC UK also has professional resources.