Newborn babies to be tested for health condition affecting Jesy Nelson’s twins

Newborn babies will be tested for spinal muscular atrophy (SMA) – a condition which affects singer Jesy Nelson’s twins – as part of a national trial from Thursday.

The new scheme, which is being rolled out across England, will look at whether adding SMA to the established blood spot test programme for newborns makes a difference to care.

Evidence will be gathered on how screening works in practice, including how quickly babies can be referred for specialist help, before the UK National Screening Committee looks at whether to make it a permanent part of the blood spot test programme.

At the moment, the newborn blood spot (formerly known as the heel prick) test checks if babies have any of 10 rare conditions, some of which can be life-threatening.

The scheme will look at whether adding SMA to the blood spot test programme for newborns makes a difference to care (Andrew Matthews/PA)

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SMA affects around 60 to 70 babies born in England every year and can cause severe muscle weakness, leading to difficulty moving, breathing and swallowing.

Treatments for SMA work best when started as early as possible, ideally before symptoms appear.

Research suggests screening across England could each year prevent around three early deaths, stop around two babies needing permanent ventilation and enable around 37 babies with SMA to live largely normal lives.

In August, Little Mix star Nelson said she was in a “dream” after her daughters underwent an operation to have their nasogastric feeding tubes removed.

Ocean Jade and Story Monroe have Type 1 SMA, which begins in babies under six-months-old.

Jesy Nelson has been campaigning for the condition to be added to the screening test (Ian West/PA)

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Nelson revealed her daughters had the rare genetic condition in January, saying they are unlikely to be able to walk or gain neck strength.

Since their diagnosis, Nelson has been campaigning for the condition to be added to the newborn blood spot screening test.

Under the rollout, a new laboratory will join the programme roughly every two months at intervals between now and October 2027.

The first phase of the rollout includes Birmingham on Thursday, followed by Manchester, South West Thames, South East Thames, Great Ormond Street Hospital and Sheffield.

Six further laboratories will then be added. They are Portsmouth, Oxford, Cambridge, Bristol, Leeds and Liverpool.

The aim is for all babies born in England to be offered SMA screening by spring 2028.

Louise Parkes, chief executive at Great Ormond Street Hospital Charity, said: “This is a hugely important moment for babies and families. The start of national rollout of newborn screening for spinal muscular atrophy means more babies will be diagnosed before symptoms appear, giving them the best chance of accessing effective treatment before irreversible damage is done.

“This change follows years of tireless campaigning by the SMA community and shows what can be achieved when advances in treatment are matched by earlier diagnosis.

“For families affected by SMA, this rollout has the potential to change the course of their child’s condition.

“But we should also learn from the journey it has taken to get here. As science and treatments continue to advance, we need a newborn screening system that can respond at pace when there is strong evidence that earlier diagnosis could transform a child’s life.”

Andy Fletcher, chief executive of Muscular Dystrophy UK, said babies in Wales and Northern Ireland would be left behind if they too did not introduce a programme. Scotland has already begun screening.

He said: “We must not forget that every baby matters. It’s simply not acceptable that a postcode lottery exists in the UK. Babies with SMA in Wales and Northern Ireland deserve the same chance of early diagnosis.”

Dr Harrison Carter, director of screening at NHS England, said: “This is a potentially life-changing moment for parents in Birmingham, whose babies will be the first to benefit from spinal muscular atrophy screening on the NHS.

“We know that catching the condition before a baby has developed symptoms gives them the best chance of benefiting from NHS treatments.

“It can help prevent the severe muscle weakness caused by the condition and give children the best chance of reaching important milestones, such as sitting, walking and breathing independently.

“But this is just the start. The NHS is fast-tracking the rollout of this programme, bringing screening laboratories on board at pace so that, by 2028, every baby born in England will be offered this important advance in newborn screening.”

Clare Livingstone, head of professional policy and practice at the Royal College of Medicine, said: “Midwives play an important role in newborn screening, supporting parents to understand the tests being offered and why.

“Adding SMA to the newborn screening is going to make a huge difference.”

SMA UK chief executive Giles Lomax said: “After years of campaigning by the community, it is incredibly powerful to see this work becoming a reality and I would like to say thank you to everyone for making this come to fruition, including the laboratory staff that have worked tirelessly.

“Thousands of babies each year will have the opportunity to be diagnosed earlier and access life-changing treatment before irreversible damage occurs.

“This is a significant step forward for families affected by SMA, and a moment the whole community can be proud of.”