Newborn babies in England now being tested for SMA after Jesy Nelson campaign

Newborn babies in England will be tested for the rare genetic condition spinal muscular atrophy (SMA) from Thursday.

Government statistics show that the condition, which causes progressive muscle weakness, affects just one in every 10,000 babies across the UK.

Singer Jesy Nelson, formerly of Little Mix, has been the face of the campaign for newborns to be tested for SMA after her twin daughters, Ocean Jade and Story Monroe, were diagnosed. Ms Nelson earlier said that they are unlikely to ever be able to walk.

The nationwide trial, launching on Thursday, aims to evaluate whether incorporating testing for SMA into the existing newborn blood screening programme improves patient care and outcomes.

Healthcare officials will gather practical evidence on how the screening functions in practice, including how rapidly infants with SMA receive specialist referrals, before the UK National Screening Committee considers adding it permanently to the routine programme.

Currently, the standard newborn blood spot test, historically known as the heel prick test, assesses infants for 10 rare health conditions, a number of which can be life-threatening.

Each year, SMA affects between 60 and 70 babies born in England.

Medical treatments for SMA demonstrate the highest effectiveness when initiated as early as possible, ideally before any physical symptoms begin to show.

Findings suggest that universal screening across England could prevent roughly three early infant deaths each year, prevent two babies from relying on permanent ventilation, and help about 37 babies with SMA live largely normal lives.

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.

“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.”