Newborn babies in England will be tested for spinal muscular atrophy (SMA) as part of a national trial starting Thursday. The condition affects the twins of Little Mix singer Jesy Nelson.
The scheme, being rolled out across England, will assess whether adding SMA to the established newborn blood spot test programme improves 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 decides whether to make it a permanent part of the programme.
What the screening involves
Currently, the newborn blood spot test (formerly known as the heel prick test) checks for 10 rare conditions, some of which can be life-threatening. SMA affects around 60 to 70 babies born in England each 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 that 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.
Jesy Nelson’s campaign
In August, 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. Nelson revealed their diagnosis in January, saying they are unlikely to be able to walk or gain neck strength, and has since campaigned for the condition to be added to the newborn blood spot screening test.
Rollout timeline and reactions
Under the rollout, a new laboratory will join the programme roughly every two months until October 2027. The first phase 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: 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.”
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.”
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.”
