Sudden Unexpected Death in Childhood

Sarah Edwards Excerpts

Tuesday 24th March 2026 Westminster Hall

[Andy MacNae]

Precisely, and that would be to treat this issue with the importance, urgency and focus that it deserves. The very fact that most research is now charity-led is quite revealing.

This research includes the Pioneer study—a population-based investigation to reduce sudden unexplained deaths in childhood—at the University of Bristol, which is beginning to analyse national mortality data and incorporate family-led research priorities. Science has advanced: genomics, cardiology, neuropathology and data science now offer real hope that the causes that were once thought unknowable may finally be within reach. However, scientific possibility alone is not enough. Findings from the UK’s Pioneer study, alongside the growing body of global evidence on SUDC, must be properly considered and applied. They should inform linked datasets and guide action by organisations such as Genomics England, the National Institute for Health and Care Excellence, the National Institute for Health and Care Research, the Department of Health and Social Care and the NHS.

The opportunity is there, but right now we rely far too much on this limited charity-funded research. If we are ever to shift the dial, as the hon. Member for East Londonderry (Mr Campbell) said, we need a national plan delivering co-ordinated, planned actions that enable and accelerate meaningful projects.

[Sarah Edwards (Tamworth) (Lab)]

I thank my hon. Friend for bringing forward such an important debate. Constituents of mine have asked me to attend not just to thank him, but to support his calls for a co-ordinated strategy. They lost their son when he was three, so they share all such families’ feelings that more needs to be done to get to the bottom of understanding the unimaginable tragedy that many parents have suffered, so there is a bit more closure.

[Andy MacNae]

I thank my hon. Friend for that intervention, which again focuses on the need for co-ordination in the effort to meet the scale of this challenge.

One of the most compelling issues requiring investigation is the association between SUDC and febrile seizures. National and international data show that 30% of SUDC cases involve a history of febrile seizures—10 times higher than in the general population. Frankie Grogan had 12 seizures before he died, but he was never reviewed by a specialist. At this point, it is really important to stress that febrile seizures are very common and SUDC is rare, but the persistence of this correlation—known before the last debate—demands investigation. A national plan must accelerate understanding of the link and determine whether children who have repeated febrile seizures, or a particular subset of affected children, need different pathways of care.

We must also improve public information. Information for families is inconsistent and, at times, invisible. Leaflets on febrile seizures vary significantly across NHS trusts; some fail to mention that seizures can occur during sleep or that monitoring options exist. SUDC itself—including the 60% of cases with no seizure history—is missing from the NHS website. After the 2023 debate, a token reference was added to the SIDS page, but then removed. Imagine a family receiving a post-mortem conclusion of SUDC but finding nothing when they search the NHS website. That is clearly unacceptable, but something that the Government can easily fix.

There has been welcome progress in other areas. The national child mortality database is a world-leading resource. Since the previous debate, the NCMD has created SUDC-specific forms and launched pathways for genomics and cardiac screening. SUDC UK, a charity founded only in 2017, has helped to ensure that families have access to whole genome sequencing through the R441 pathway. That advocacy was born out of what Nikki Speed, chief executive of SUDC UK, describes as the “paralysing fear” that she and many families carry every day. She explained to me that for years after her loss, she got little sleep, because she was constantly having to have a hand on her surviving children to be sure they were alive and well.

That fear leads families to delay trying for another child, even though a new life could be a source of hope and healing amid loss. It is completely rational for a parent to fear, if one of their seemingly healthy children has died without explanation, that their other seemingly healthy children could also be at risk. That is why genomic and cardiac screening is so important: it not only informs research but protects surviving siblings. For some families, genetic analysis has revealed risks requiring vital preventive treatment, yet those crucial tests are currently available only after the post-mortem process concludes, which brings me to the next point.

Paediatric pathology is in crisis, as summarised in a recent report by the Royal College of Pathologists. Families experiencing SUDC routinely wait nine to 12 months, or sometimes longer, for a post-mortem conclusion. During that time, they live in fear—fear for their surviving children, fear of future pregnancies, fear of the unknown. Their grief is suspended and their lives are on hold. Only after that traumatic wait can they finally access genomic testing or cardiac screening to safeguard their children.

After speaking with Brian and with Nikki, I would like to outline the typical timeline for a family affected by SUDC. Your child is fine. Then they die, leaving you traumatised and in shock. The child is taken away from you, and you have no control over what is happening. The ensuing process is statutory, but the response is based on evidence from infant death and so is suboptimal. After scary interactions with the police and in deep shock, you return home to deafening silence or to the child’s siblings, to whom you must tell the very worst news. Then you wait. You do not wait one week or two. You do not wait a month or even six. You most likely wait nine to 12 months. If the pathology is complex, you wait even longer. Throughout the whole wait, you are scared for your other children and scared to get pregnant again. You put your life and your grief on hold. Only then, often about a year later, do you receive the post-mortem report. You have been desperately waiting for this moment, but now it is here it brings back all the trauma of losing your child, and only now are you eligible to see whether anything hereditary is putting other family members at risk.

This is inhumane. When we lost our daughter, we had the answers right away, yet the trauma is still with us. I cannot fathom what it would be like to sit in deafening silence for months, and the long-term damage that that could do. This must change. A national plan should establish faster pathways for cases in which timely information directly affects vulnerable bereaved families and child safety.