All Newborn Babies in England to Receive Screening for Spinal Muscular Atrophy

Major study aims to detect SMA early and give babies access to life-changing treatment

All newborn babies in England will be tested for the rare genetic condition spinal muscular atrophy (SMA) as part of a major screening study designed to improve early diagnosis and treatment.

The announcement has been welcomed by campaigners, including former Little Mix singer Jesy Nelson, who has spent years calling for routine SMA screening after her twin daughters were diagnosed with the condition.

Nelson described the decision as a “victory for every family” affected by SMA, saying the move would give future families the chance to access early treatment and better outcomes.

SMA is a genetic disorder that causes progressive muscle weakness. It can affect a child’s ability to move, walk, swallow and breathe. In the most severe cases, the condition can become life-threatening before a child reaches the age of two.

However, advances in medical treatment, including pioneering gene therapies, have transformed the outlook for many babies diagnosed with SMA. These treatments are most effective when given before symptoms appear, as they cannot reverse damage that has already occurred.

This is why health experts have pushed for newborn screening, allowing affected babies to receive treatment as early as possible.

Earlier this year, Nelson revealed that her daughters, Ocean Jade and Story Monroe Nelson-Foster, had been diagnosed with SMA and had been told they would “probably never walk”.

The singer has shared updates about her daughters’ journey, including the challenges of managing their treatment, such as wearing spinal jackets and foot splints during a heatwave.

In a trailer for her upcoming documentary Jesy Nelson: Life Changing on Prime Video, she spoke about the emotional impact of her daughters’ diagnosis and the challenges faced by families living with SMA.

The new screening programme will begin in most parts of England from October 2026, with a full rollout expected by October 2027.

Scotland already offers SMA screening for newborn babies, while previous proposals in England faced criticism after plans suggested only 72% of babies would initially have access to testing.

The screening process will involve using a small blood sample taken from a baby’s heel shortly after birth, as part of the routine newborn heel-prick test.

Nelson said the decision represented a major moment for families affected by the condition.

“Today is a day of hope,” she said, adding that early diagnosis would give future SMA families the opportunity for the best possible outcomes.

Hundreds of thousands of babies are expected to take part in the study, which will be led by researchers at the University of Oxford.

The results will help the UK National Screening Committee decide whether SMA testing should become a permanent part of newborn healthcare in England.

Health Secretary James Murray praised campaigners who have raised awareness of SMA and pushed for changes in screening policy.

“No parent should have to watch their child lose the ability to move or breathe, knowing that earlier treatment could have made all the difference,” Murray said.

The introduction of nationwide SMA screening marks a significant step towards earlier intervention, offering hope to families and potentially changing the future for children born with the condition.