Parents of sudden-death children 'let down by NHS'

The NHS is failing some parents whose children die unexpectedly, a leading paediatrician has told BBC Panorama.

About 50 children's deaths in the UK every year are termed as "sudden unexplained death in childhood" (SUDC). Little is known about what causes them.

Some bereaved families get none of the support they're entitled to, setting them up for "a lifetime of misery", says Dr Joanna Garstang.

The NHS says it "offers bereaved families a range of support".

Over recent years, awareness has grown among the public and medical community about Sudden Infant Death Syndrome (Sids). Formerly known as "cot death", SIDS impacts children under one.

There is much less awareness about SUDC - the medical term for the unexplained death of a child between the ages of one and 17.

Gavin and Jodie's two-year-old son Addy died unexpectedly in November 2022.

"He was just such an easy, happy baby," says Jodie.

The couple - who could not have children of their own - adopted Addy at eight months old.

"The most precious thing has been taken from us, and nobody knows why," says Jodie.

BBC Panorama followed the parents over nine months as they searched for answers to why their son died - and whether it could have been prevented.

Even after a forensic post-mortem examination, no-one could work out why the little boy went to sleep and never woke up, so his death was categorised as SUDC.

When a child dies unexpectedly, a review is held to gather information about what happened. The NHS is required to assign a key worker to help bereaved parents to navigate this process, and provide emotional support.

The role of key worker can be taken by a range of practitioners and is often a specialist nurse.

However, even though it is a mandatory requirement, a survey carried out by the Association of Child Death Review Professionals (ACDP) found that more than half of NHS areas in England do not have a specialist nurse to visit parents after an unexpected death.

"It makes me really angry," says paediatrician Dr Joanna Garstang, the chair of the ACDP, who runs one of the few teams in England that support parents.

"Bereaved families after the sudden death of a child are the most vulnerable people. And if we don't put in early support… we're setting these parents up for a lifetime of misery."

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Gavin and Jodie feel they were left to cope with their grief while also navigating a daunting death review process, with no regular support from a key worker.

They say there were a few home visits by a nurse and doctors after Addy died, but then they were left to look for answers on their own.

Both parents arranged their own private grief counselling because they were told it would be a six-month wait on the NHS.

Since Addy's death, both Gavin and Jodie have been haunted by the thought that they could have done something to save him.

The number of babies who die from Sids has been cut by 80% in the past 30 years, thanks to research and awareness campaigns.

There has been far less research into the unexplained deaths of children.

The most significant work on SUDC is currently taking place at New York University.

The team there has a database of more than 300 SUDC deaths and has recently analysed video monitor footage of five children who died unexpectedly in their sleep. In each of the five cases the children showed signs of seizures.

A seizure is a fit that can happen when a child has a fever or illness. Most children are fine after a seizure but the researchers want to work out why a small number of children die.

They're now building a world SUDC database to look for patterns and more evidence.

This is the first time a link between SUDC and seizures has been captured on camera. It's only a small sample, but researchers say the results, part-funded by the charity SUDC, are significant.

"I think it's a huge breakthrough," says lead researcher Laura Gould, who lost her daughter Maria to SUDC 25 years ago. "Now we're finding actual clues."

Richard Bilton investigates sudden unexplained deaths in children and looks at the research trying to find out why they happen.

Watch now on BBC iPlayer (UK Only) or watch on BBC One at 20:00 on Monday 5 February (20:30 in Northern Ireland and 22:40 in Wales)

Not knowing why a child has died has led to some parents being wrongly suspected of causing their children harm.

In 2021, Tom and Lucy's son died without warning during the night.

The tragedy was immediately treated as a crime by police. We are using pseudonyms to protect their identities.

Tom and Lucy were taken to a police station and their other children were taken into care. For months they were only able to see them on supervised visits.

It took nearly a year for Tom and Lucy to be cleared - when the coroner confirmed that their son's death was from unidentified natural causes.

The police have apologised to the family and say they have learned from what happened.

The family say they were also let down by the NHS because they didn't have any support.

Some places in England do have a trained nurse to help families who have experienced the sudden death of a child.

In Worcestershire, nurse Donna Steward supports parents like John and Laura, whose two-year-old son Benjamin died in 2022.

"I think parents can feel really lost," she says.

Donna is there for home visits and phone calls with the bereaved family for as long as they need her to be.

"I always make it clear to parents, I can't make this better for them, but anything that I can do for that family to make it easier, I absolutely will."

Benjamin's parents felt Donna was their "voice" from early on and helped them to understand the "medical jargon" that came with the review into their son's death.

"Having somebody advocate for you when you're going through something that hard, it means a lot," says Laura, who describes Benjamin as a "happy, robust, energetic, lively little boy".

In contrast to John and Laura, Addy's parents did not feel they had anyone to help ahead of their son's inquest in January 2024.

The coroner provided the parents with medical documents which they found hard to understand.

They say the first bit of reassurance they received came a few days before the inquest, from a paediatric pathologist who had examined him at Sheffield Children's Hospital.

In the months before Addy died, he had suffered a few colds, some problems breathing and some eczema. His parents worried that this might have been significant.

"I want you to think that this is not your fault… that he didn't suffer," pathologist Professor Marta Cohen told them.

"There is nothing you could have done to avoid it," she said as she hugged Jodie.

"The reality is, I don't have any answers for you today. He was a beautiful, well-looked-after child."

Jodie says she cried, but adds that it was what she needed to hear.

Sheffield Children's NHS Trust was responsible for supporting Gavin and Jodie and says it recognises there are areas for improvement in bereavement support, and it has undertaken a thorough review to do this.

The NHS says it offers bereaved families a range of support, and that all health trusts are responsible for identifying a key worker for families when they have lost a child.

It adds that the number of these roles is set to expand.

The family says it is relieved the inquiry is over. But they are still searching for answers.

The coroner at Addy's inquest recorded a verdict of natural death caused by SUDC. It means that still nobody knows why he died.

SUDC is a category and not a cause, says Jodie, and more needs to be done to understand it.

"Nobody dies for no reason. Something happens to these children."