Sudden Unexpected Death in Childhood

Andy MacNae Excerpts

Tuesday 24th March 2026 Westminster Hall

[Andy MacNae (Rossendale and Darwen) (Lab)]

I beg to move,

That this House has considered Sudden Unexplained Death in Childhood.

It is a pleasure to serve under your chairship, Sir John, and to open this important debate. Today we are discussing a category of child death that has previously been described in this room as

“one of the most serious medical phenomena in our country”.—[Official Report, 17 January 2023; Vol. 726, c. 88WH.]

Sudden unexplained death in childhood is the fourth leading cause of death in children aged one to 18. Since Parliament last debated this issue in 2023, in the UK around 120 children who appeared perfectly healthy have died suddenly. That is the equivalent of four full classrooms of pre-school and school-aged children—four classrooms of lives cut short without explanation.

For families, the devastation after a child dies is immediate and lifelong. What makes SUDC uniquely cruel is not only the loss, but the absence of answers. Why did those children die? I can only imagine the pain of that. When we lost our daughter Mallorie to Edwards’ syndrome, we at least had the comfort of knowing why and what was coming. We knew there was nothing more we could do. Families experiencing SUDC have none of that. It is brutal. We cannot continue to tell grieving parents, “I am sorry; we simply don’t know why your child died.” As a society we have a responsibility to do all we can to find the answers to prevent future deaths. That is why today we ask the Government to lead the search for answers through a co-ordinated national plan.

First, let us be clear about what SUDC is and what it is not. Sudden unexplained death in childhood is the sudden unexpected death of a child over one year old that remains unexplained after a full investigation. Cases do not involve crime, terminal illness, diagnosed epilepsy, cardiac conditions or tragic accidents. The children appear healthy. They fall suddenly ill or go to sleep and never wake up. Parents, grandparents and siblings are left asking, “Why did this happen? Could it happen again? Is there a genetic risk? Will my other children die? Should we risk another pregnancy?” Those are questions that currently no one can answer.

At the heart of today’s debate and our discussion is a little boy named Frankie Grogan. Frankie was three years old: bright, curious and full of energy with a particular love of giraffes. His family had every reason to believe that they would watch him grow and thrive. Instead, he went to sleep and did not wake up. The night before, Frankie was excited that his father would be running the Manchester 10k the next day. He briefly woke at 4.30 am asking for water. A few hours later, he was found to be still and unresponsive. Despite a thorough investigation, no cause of death could be identified. That happened in 2019 and Frankie’s family, who are here today, still do not know why.

In the midst of unimaginable grief, Frankie’s grandfather, Brian Topping, came to see me. He did not ask for sympathy; he asked for structure, leadership, co-ordination and a plan. Frankie’s story reminds us that behind every statistic is a child with a name, a personality and a future that should have been. It is because of Frankie and the determination of his family that the debate is taking place today. Through SUDC UK, families, clinicians and researchers have united around the conviction that unexplained should never mean unexamined. We know that research and awareness raising, backed up by national leadership, can make a profound difference. In other areas of childhood death, when priorities are clear, progress follows.

[Dr Roz Savage (South Cotswolds) (LD)]

I thank the hon. Gentleman for bringing forward this important debate and for his very moving speech. I recently had the honour of meeting Eleanor Wroath, who is here in the Gallery today with her son Sam. Eleanor lost her daughter Miranda, aged 18 months, in 2008. Since then, she has been a tireless campaigner for raising awareness of sudden unexplained death in childhood. She and Sam will be running the Great North Run in support of the charity. Does the hon. Gentleman agree that, as highlighted by campaigners such as Eleanor and Sam, there is an urgent need for more specialist research to understand the causes of and the risk factors underlying SUDC?

[Sir John Hayes (in the Chair)]

Order. Given the seriousness of the subject and of the hon. Lady’s intervention, I let that go, but interventions should generally be slightly more pithy.

[Andy MacNae]

Yes, of course I agree, and I am coming on to the research. We simply owe families answers and our best efforts to find those answers.

As I was saying, we know that research and awareness raising, backed up by national leadership, can make a profound difference, as it has in other areas. When priorities are clear, progress does follow. For example, research and safer sleep campaigns have significantly reduced unexplained infant deaths—known as sudden infant death syndrome, formerly cot death. About 200 babies die from SIDS each year compared with 40 older children from SUDC, yet there has been 100 times more research into SIDS than SUDC, which receives only a fraction of the attention.

Peter Fleming CBE, the clinical lead for the SIDS Back to Sleep campaign and a scientific adviser to SUDC UK, has said:

“Research into unexpected deaths in infancy has led to an 80% reduction in such deaths over the past 30 years in the UK. Unexpected deaths in older children are less common, much less well understood, and to date little research has been conducted in the UK to try to understand or prevent such deaths… I am convinced that with the right research we will soon be able to prevent many deaths”

of older children. The families here today are not asking for guarantees—they understand that science takes time—but simply asking for this issue to be treated with the urgency it deserves.

[Mr Gregory Campbell (East Londonderry) (DUP)]

I congratulate the hon. Member on securing this debate on what is an incredibly emotional topic. It is difficult to imagine parents having grief beyond what he is describing. On the research, does he agree that while no guarantees can be given, if Governments put more money into it, families will understand that and will see progress and, we hope, a better outcome?

[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.

[Carla Lockhart (Upper Bann) (DUP)]

The hon. Member is certainly making a very powerful speech on this issue. On 7 January 2024, Teddy Jason Williamson, aged just seven weeks and from my constituency, died of sudden infant death syndrome. Does the hon. Member agree that more practical support is required? Yes, we need research, but we also need there to be practical support: bereavement nurses, dedicated suites in hospitals, and counselling support post the death of the child.

[Andy MacNae]

Yes. I will touch on that in a moment. It is part of a wider picture of bereavement support and bereavement pathways nationally. From baby or infant loss to unexplained death in childhood, bereavement services are patchy and in many cases far below the standards that we need to see. We need to make that service universal.

Let us move on to another cause of trauma: child death investigations. This issue is wider than SUDC but has profound impacts. Current national guidelines—the statutory guidance and joint agency guidelines—are built on historical evidence from infant deaths and have not been updated since the new pathways for genetics and cardiology were launched. That is important as it may affect inequity of care and access to these important tests. Guidelines should be updated to reflect new evidence and current pathology timeframes, and any consultation on those updates should include charities such as SUDC UK, which supports families of children up to 18 years old.

From investigation to family support, NCMD data tells us that 30% of all child deaths are sudden and unexpected, and a fifth of families leave A&E with no understanding of why their child has died. While consistency has improved since the last debate, the quality of bereavement support remains deeply uneven, as the hon. Member for Upper Bann (Carla Lockhart) has raised. Families affected by SUDC often experience complicated grief with severe and long-lasting consequences for parents and siblings, and this requires specialist support. The NIHR-funded Quintet project and the wider strategic partnership for sudden child death will soon provide evidence-based recommendations for supporting those families. These should be incorporated into a national plan.

To conclude, what is lacking is not expertise nor compassion; rather, it is co-ordination and leadership. I am calling for a Government-led national plan for sudden unexplained death in childhood. That would turn the issues that I have raised into strategic objectives with clear timelines, milestones and measurable outcomes. It should be developed alongside families, clinicians and researchers, and report back to Parliament every two years. Such a plan would send a powerful message: these children matter, their deaths are not footnotes, and unexplained does not mean unimportant. My thanks to Brian Topping, Nikki Speed, the courageous families here today and all those who have worked tirelessly for progress and understanding. I hope that this debate can play a part in delivering that.

[Several hon. Members rose—]

--- Later in debate ---

[Andy MacNae]

I thank everyone who has contributed to this debate. I thank the shadow Minister, the hon. Member for Sleaford and North Hykeham (Dr Johnson), for bringing her depth of professional experience. I also thank the Minister for her comprehensive response to the points raised.

I want to reflect on a couple of the issues that were raised. First, I thank the hon. Member for Spelthorne (Lincoln Jopp) for taking me to task on describing SUDC as a cause of death. He is absolutely right: it is not; it is simply a category of the unknown. That is worth reflecting on, because it puts into context the request from my hon. Friend the Member for Altrincham and Sale West (Mr Rand) that we focus on understanding, predicting and preventing. When we combine that great unknown with that appeal to simply understand, we recognise the challenge, but also the imperative to make progress in this area. It is clear that there is an absolute consensus across both sides of the House in calling for a plan and the prioritisation of this issue. It was good to hear the Minister recognising the importance of that.

Bereavement support came up several times. We have so much terminology: bereavement support, bereavement care and longer-term mental health support. The moment at which a family needs support to deal with the trauma of loss can vary greatly. It can be a day, week or year after the loss and having the right support at the right time remains absolutely vital. I very much hope and believe that it is something that the parent services and maternity safety investigation and the ongoing taskforce will grasp as a priority in their work.

To reflect on some of the commitments made by the Minister, I think she has recognised that some things can be done quickly and effectively—simply getting good information about SUDC up on the website seems to be an obvious imperative that we can be acting on. However, Members have raised a range of opportunities, in particular the opportunity to build on the charity-funded research done so far and move it into Government-funded research. I would be grateful if the Minister agreed to meet with me and SUDC UK to discuss how we can take this debate forward, because as hon. Members have said, it cannot stop here. This must be the start of an ongoing process where we build understanding, take action and get real change to create a genuine legacy—a legacy for Frankie and all the families affected.

Again, I finish by thanking everyone in the Public Gallery for being here. It really matters, and I am so grateful for your presence.

Question put and agreed to.

Resolved,

That this House has considered Sudden Unexplained Death in Childhood.