The sudden, mystery death of Amy, 12... and how her mum used radical IVF and donor eggs in a desperate bid to stop it happening to her newborn babies

The past clip Beewan Athwal and Adrian Kirby saw their beautiful, vibrant 12-year-old girl live she was skipping up nan stairs to bed.

It was an mean Saturday night, successful December 2020, and Amy, who had spent nan time wrapping Christmas presents for her friends, turned backmost concisely towards her parents. 'Good night,' she said. 'I emotion you.' It was a fleeting infinitesimal of affection, and 1 which TV shaper Beewan, from North London, now carries adjacent to her heart.

The adjacent morning, Beewan recovered Amy acold successful her bed. Her small woman – apparently wholly healthy, without truthful overmuch arsenic a sniffle – had died, without warning, successful her sleep.

The nonaccomplishment of a kid is, for immoderate parent, almost unimaginable. But today, much than 3 years since that devastating tragedy, what makes it peculiarly difficult to comprehend for Beewan, Adrian and their older son, 22-year-old Jack, is that they are still nary person to knowing why Amy died.

It has been attributed to a small known – and moreover little good understood – arena called abrupt unexpected decease successful childhood, aliases SUDC.

This is an umbrella word fixed to cases wherever a kid dies, usually successful their sleep, betwixt nan ages of 1 and 18 and which cannot beryllium explained by medics, moreover aft a station mortem introspection and thorough investigation.

It affects betwixt 40 and 50 children each twelvemonth successful nan UK – nan 4th starring class of decease for children aged 1 to 4 – and suspected causes see febrile seizures, bosom hit disturbances and familial abnormalities.

But nan truth is, nary 1 yet knows why children dice for illustration this.

For these reasons, Beewan, 46, and Adrian, 55, made a heartbreaking decision. Desperate to find a measurement done their condolences – and, for illustration galore parents who person mislaid a kid – they chose to plug nan spread Amy had near successful their lives by having much children.

But alternatively than consequence nan aforesaid point happening to them a 2nd time, their 2 children Alfie, now 20 months, and five-week-old Daisy, were created via IVF astatine a session successful Greece utilizing philanthropist eggs and philanthropist sperm – a guarantee that, if location was an underlying familial logic for Amy's death, they would not inherit it.

'Going done this, losing Amy for illustration this, has been a surviving nightmare,' says Beewan today.

'Our lives – nan astir boring, normal lives – changed successful an instant. When nan worst point you tin ideate has happened, thing feels scary immoderate more. There's nary sliding standard for grief, but we weren't capable to opportunity goodbye. There was thing we could person done to forestall it.

'I've ever believed subject tin explicate everything. You want to beryllium capable to rationalise what's happened and erstwhile you can't, it plays havoc pinch your brain. We fell apart.'

While Alfie and Daisy tin ne'er switch their older sister, Beewan adds: 'They are a complete and utter blessing. They're not portion of nan trauma we each went done and I can't ideate life without them. I wouldn't person sewage done it without them.'

The time earlier Amy's decease had been typically hectic. Amy, who was successful Year 8 astatine a secondary schoolhouse successful North London, had a engaged societal life pinch martial arts and swimming lessons and, that morning, a creation people astatine nan North London School of Performing Arts.

There were nary signs of immoderate wellness issues: nary of nan family had had Covid and Amy had 'barely been to nan doctors successful her full life', says Beewan, who has worked connected high-profile BBC dramas specified arsenic Gentleman Jack and The Fall.

'She went upstairs astir 9.30pm aft watching thing connected Netflix, calling retired 'I emotion you' arsenic she went. It was conscionable very ordinary. But that was nan past clip I saw her alive.'

It is not nan main infinitesimal Beewan replays successful her head. Rather, it's nan traumatic events of nan pursuing morning, Sunday, December 6, which haunt her successful flashbacks because 'they conscionable don't make sense'.

When Amy hadn't travel downstairs by 10am, Beewan went to aftermath her, joking that she'd already turned into a teenager.

'I went into her chamber and saw her underneath nan covers,' she recalls, her sound shaking. 'She was unnaturally still. I thought she was pretending to beryllium asleep, but erstwhile I reached retired to touch her, she was incredibly cold. I flung nan covers back. I knew consecutive distant that she'd died.'

What happened adjacent is simply a horrifying blur. Beewan dialled 999 and was urged to execute CPR connected her girl until paramedics arrived 5 minutes later.

There was thing that could beryllium done. The mates were later told Amy had astir apt died wrong a mates of hours of going to bed.

'I was truthful confused that morning,' Beewan says. 'I kept reasoning I was going to aftermath up. Because really could it beryllium real?'

The events of nan pursuing months were nary little of a nightmare arsenic nan family were near unsocial without answers. A post-mortem introspection was carried retired 10 days later and nan results delivered by email. 'It conscionable said 'cause of decease could not beryllium ascertained',' she said.

'I was perfectly distraught. How could they not know?

'A second, much detailed, introspection was besides inconclusive. In nan absence of immoderate explanation, Amy's decease was put down arsenic abrupt big decease syndrome [when an big dies abruptly of cardiac arrest, without an evident cause].

'It felt for illustration everyone conscionable shrugged their shoulders and location was nary 1 who could really show america what was going on.

'Our GP didn't person a hint really to support us. No expert aliases pathologist mentioned SUDC – it only came up because a friend did immoderate investigation online.'

The NHS is required to delegate a cardinal worker to thief bereaved parents, successful nan lawsuit of an unexpected kid death, to navigate nan process and supply affectional support.

However, arsenic Beewan and Adrian experienced, it doesn't ever happen. A study carried retired by nan Association of Child Death Review Professionals (ACDRP) recovered much than half of NHS areas successful England do not routinely do so.

Community paediatrician Dr Joanna Garstang, chair of nan ACDRP, said parents were regularly being grounded by nan NHS.

'You person to get nan services correct for each family erstwhile a kid dies suddenly,' she says.

'We besides request acold much costs for investigation – we person nan England nationalist kid mortality database, which contains each nan accusation connected each kid decease and could beryllium nan ground for world-leading research, but we can't get backing because it only affects 50 kids a year. That's a tragedy. If you can't explicate a child's decease it makes it truthful overmuch worse. You request to beryllium capable to rationalise it.'

There has been, to date, small investigation connected SUDC.

That is successful stark opposition to SIDS – abrupt babe decease syndrome, besides known arsenic cot decease – which involves nan abrupt decease of a kid nether nan property of one. It utilized to impact 2,000 babies a twelvemonth but cases plummeted 80 per cent successful 2 decades aft investigation suggested nan consequence was linked to putting babies to slumber connected their fronts. Sudden big decease syndrome, too, has attracted sizeable research

Research connected SUDC remains inconclusive, but 1 study from New York University suggests fever-related seizures whitethorn play a role. Video footage from family 'nanny cams' revealed that, successful 5 cases, toddlers died pursuing a little seizure. Some had signs of mild infections.

But Dr Garstang said: 'A study a mates of years agone showed an identical proportionality of febrile seizures successful children pinch explained deaths and unexplained deaths.

'So it whitethorn beryllium nan seizure is conscionable portion of nan dying process. It's absorbing to study but it doesn't springiness america immoderate answers.'

Other studies person besides analysed nan DNA of children whose deaths were attributed to SUDC and recovered immoderate mutated genes successful common, including immoderate associated pinch bosom and encephalon disorders.

Lead interrogator Dr Richard Tsien from NYU's Grossman School of Medicine said: 'Along pinch providing comfortableness to parents, caller findings astir familial changes progressive will accumulate pinch time, uncover nan mechanisms responsible, and service arsenic nan ground for curen approaches.'

Because Amy's origin of decease remained unclear, a pathologist recommended her family person their ain bosom wellness investigated successful lawsuit an undetected rumor ran successful nan family. Some researchers judge faulty bosom genes could beryllium down immoderate deaths put down arsenic SUDC.

Beewan said: 'It was each truthful scary and unsupported. There was nary 1 successful nan NHS saying, 'This is what you person to do.' We had to activity retired a cardiologist privately, by ourselves. Finally, aft galore ECGs, CT and MRI scans, we were told successful November that it was bully news: investigations showed each our hearts were good truthful it was little apt to beryllium an inherited problem.

'In a measurement it was good, but I wanted an reply for Amy and it doesn't springiness america one. And it isn't going to extremity maine worrying astir it happening again. Because it happened truthful suddenly, without warning, location will ever beryllium this existent fearfulness it mightiness besides hap to Jack. He has to unrecorded pinch that too.'

The only dream for an reply comes from DNA study – which whitethorn return years, if it comes astatine all. All children whose deaths are unexplained can, if parents consented to person samples of their insubstantial retained astatine nan post-mortem examination, person their DNA sequenced by Genomics England.

This intends each 100,000 genes are mapped retired successful a shape unsocial to nan individual. This tin past beryllium analysed and compared to nan DNA of different children who person died successful akin circumstances successful nan dream of uncovering faulty aliases mutated genes successful common.

This, successful turn, could lead to a imaginable treatment. Amy's familial accusation has now been sent disconnected to nan New York squad truthful it tin beryllium analysed arsenic portion of its increasing database. But immoderate accusation will return clip – astatine nan moment, scientists only understand nan usability of astir 6,000, aliases six per cent, of our genes.

'Hopefully, 1 day, it'll springiness america an answer,' Beewan says.

Until then, it is their 2 caller children who person brought life backmost into their family.

The mates travelled to Greece successful 2021 – wherever they had spent galore happy summertime holidays pinch Amy and Jack – to an IVF clinic. They knew they wanted much than 1 child, and created respective embryos utilizing philanthropist eggs and sperm.

It was not without heartache. Two embryos were initially transferred – which would person meant twins – and nan remainder were frozen.

But only 1 survived, and Alfie was calved successful July 2022. Two much embryos from nan original batch were transferred nan pursuing year. Again, only 1 – Daisy – survived and was calved successful February.

Because some were created astatine nan aforesaid time, they are known arsenic conceptual twins.

Beewan explained: 'After Amy died, I told Adrian that if I was going to unrecorded done this condolences I needed to person much children. My only stipulation was that these children should not person immoderate chance of inheriting immoderate consequence of SUDC. I conscionable wanted happy, patient children.'

It has been acold from easy, but it has helped nan full family to repair.

'Amy was nan past babe I'd held and breastfed, and it was incredibly difficult to do those firsts again pinch Alfie,' says Beewan. 'I've had an absolute fearfulness of them sleeping and not waking up. I perpetually cheque to spot if they're still breathing, moreover though I cognize they're genetically different to Amy.

'One time I was pushing Alfie successful his pram done nan parkland and looking astatine him gazing successful wonderment astatine nan leaves connected nan trees. And I thought, yes – life is peaceful. I tin now spot it done his eyes. I'm surviving again, and they've helped america usability arsenic a family.'

They and different affected families are now calling for greater consciousness of SUDC, and much investigation into what causes it.

Earlier this month, they lobbied Parliament, supported by doctors and Tory MP Kwasi Kwarteng, who said successful his reside that 'there tin beryllium nary much superior taxable for an MP than SUDC'.

Nikki Speed, who founded nan kindness SUDC UK aft losing her two-year-old girl Rosie successful 2013, says: 'The incidence of SUDC will ne'er alteration unless we amended training, information postulation and investigation for each families.

'There is immense imaginable to prevention lives and spare families this agony.'

For much information, sojourn sudc.org.uk