Every baby in England to be offered life-saving test for spinal muscular atrophy from birth

Newborns in England will be screened for spinal muscular atrophy through the routine heel-prick test from this autumn.

Close-up photo of a female doctor doing a test on the foot of a newborn baby in the hospital's examination room

Getty/Abraham Gonzalez Fernandez

Published: July 20, 2026 at 11:24 AM

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Babies born in England will soon be screened for spinal muscular atrophy (SMA) as part of their routine newborn heel-prick test, in a move campaigners say could transform the lives of families affected by the rare genetic condition.

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The England-wide evaluation programme will begin later this year, with NHS laboratories starting to test babies from October 2026, three months earlier than originally planned. The rollout will continue throughout 2027 until every newborn screening laboratory in England is offering the test.

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Around one in every 10,000 babies is born with SMA, meaning approximately 48 babies are affected across the UK each year. Without treatment, the most severe forms of the condition can be life limiting, but babies diagnosed before symptoms develop can now receive gene therapy and other treatments that can dramatically improve outcomes.

What is spinal muscular atrophy?

Spinal muscular atrophy is a rare inherited condition that affects the nerves controlling muscle movement. It is usually diagnosed in babies and young children, although some milder forms develop later in life.

In the most severe cases, babies may have very weak or "floppy" arms and legs and struggle to sit, crawl or walk. The condition can also affect swallowing and breathing. Without diagnosis and treatment, the most severe form of SMA can be fatal in the first two years of life.

Health experts say identifying the condition before symptoms develop gives babies the best chance of benefiting from modern treatments.

The test itself does not require any additional procedures for babies. SMA screening will be added to the standard newborn heel-prick blood test, which is routinely carried out shortly after birth.

When will babies start being tested?

Testing will begin in NHS laboratories from October 2026 as part of a national evaluation programme funded through a £4.1 million study supported by the National Institute for Health and Care Research (NIHR).

Around 72% of babies born in England will initially be covered from October 2026 before the programme expands nationwide. By October 2027, all 13 newborn screening laboratories in England are expected to be testing for SMA, up from the current seven laboratories, meaning every baby born in England, around 560,000 to 570,000 each year, will be offered the screening.

Researchers at the University of Oxford will lead the evaluation, which will assess how effective and practical it is to include SMA in routine newborn screening. The findings will help inform future recommendations from the UK National Screening Committee.

What parents need to know

Parents do not need to arrange the test themselves. Once the programme begins, SMA screening will be included as part of the routine newborn heel-prick blood test offered to babies.

The heel-prick test is usually carried out when a baby is around five days old. A few drops of blood are collected from the baby's heel and are already used to screen for 10 rare but serious conditions, including cystic fibrosis, sickle cell disease and congenital hypothyroidism. SMA will be added to this existing screening programme, so no extra test is needed.

If a baby is identified as being at risk of SMA, families will be referred to specialist services so treatment can begin as quickly as possible, giving affected children the greatest chance of better long-term outcomes.

Why early diagnosis matters

Health leaders say spotting SMA before symptoms appear can make a significant difference because treatment is most effective before irreversible damage occurs.

Michelle Kane, Director of Screening and Vaccination at NHS England, said the expansion was "a major step forward for babies and families" because "spinal muscular atrophy can progress quickly, and identifying it before symptoms appear means babies can get specialist treatment when it can make the biggest difference."

This is a major step forward for babies and families as spinal muscular atrophy can progress quickly, and identifying it before symptoms appear means babies can get specialist treatment when it can make the biggest difference.

Michelle Kane, Director of Screening and Vaccination at NHS England

Professor Lucy Chappell, Chief Executive of the NIHR and Chief Scientific Adviser at the Department of Health and Social Care, said the research would help turn "early detection into rapid, life-saving action, offering babies the very best start in life."

Campaigners welcome the announcement

The rollout follows years of campaigning by families and charities, including singer and campaigner Jesy Nelson, whose twin daughters, Ocean Jade and Story Monroe Nelson, were diagnosed with SMA.

Jesy Nelson said: "After years of campaigning, it means so much to see the heel-prick test for SMA begin rolling out from October, with implementation continuing throughout 2027 until every newborn screening laboratory across the UK is offering the test.

"Today is a day of hope. Knowing that future families will have access to early diagnosis and the opportunity for the best possible outcomes is something I'm incredibly proud to have supported. This is a victory for every family affected by SMA. Whilst it can't change the future of our children, I know it marks the beginning of a brighter future for future SMA families."

Today is a day of hope. Knowing that future families will have access to early diagnosis and the opportunity for the best possible outcomes is something I'm incredibly proud to have supported.

Jesy Nelson, campaigner

Giles Lomax, Chief Executive Officer of Spinal Muscular Atrophy UK, welcomed the decision, saying: "No family should face a postcode lottery when it comes to a condition where every day without treatment can lead to irreversible loss of motor neurons."

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Andy Fletcher, Chief Executive of Muscular Dystrophy UK, described the announcement as "a landmark moment" for families and campaigners, adding that "with a condition like SMA, time is everything, and this development will be life-changing for future generations of children born with the condition."

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