England to Screen All Newborns for Spinal Muscular Atrophy in Landmark Health Move

England Set to Test All Newborns for Deadly Muscle Disease

In a significant step forward for newborn healthcare, all babies born in England will be screened for Spinal Muscular Atrophy (SMA) — a serious genetic condition that can prove fatal within the first two years of life. The announcement has been celebrated by campaigners, medical professionals, and families affected by the disease.

Former Little Mix star Jesy Nelson, who has been at the forefront of advocacy efforts following her twin daughters' diagnoses, described the news as a defining moment. "This is a victory for every family affected by SMA," she said.

What Is Spinal Muscular Atrophy?

SMA is a genetic disorder that causes progressive muscle weakness, significantly impairing a person's ability to move, breathe, and swallow. In its most severe form, the condition is life-threatening, often claiming the lives of affected infants before they reach their second birthday.

Despite its severity, there are now groundbreaking gene therapies capable of correcting the underlying genetic fault responsible for SMA. However, these treatments must be administered before any symptoms develop — making early detection through newborn screening absolutely critical.

Jesy Nelson's Personal Fight

Earlier this year, Nelson publicly revealed that her twin daughters, Ocean Jade and Story Monroe Nelson-Foster, had been diagnosed with SMA. Doctors had warned her that the girls would "probably never walk."

The singer shared painful glimpses into her family's reality on social media, including images of her daughters wearing spinal jackets and foot splints during a summer heatwave. In a trailer for her upcoming Prime Video documentary, Jesy Nelson: Life Changing, she opened up about the emotional toll, saying: "I feel like I'm going to feel heartbroken for the rest of my life."

Despite her personal grief, Nelson channelled her experience into campaigning for systemic change — pushing for universal SMA screening across England.

When Will Screening Begin?

Scotland already has an SMA screening programme in place for newborns. England will now follow suit, with screening rolling out across most of the country from October 2026 as part of a large-scale study. A full nationwide expansion is targeted for October 2027.

Earlier proposals had drawn criticism for only covering approximately 72% of England, sparking controversy among patient advocates and affected families.

How the Test Works

The screening is carried out using a simple heel prick test — a procedure already familiar to new parents, in which a small blood sample is taken from a newborn's heel shortly after birth. The sample is then tested for genetic markers associated with SMA.

What Happens Next?

Hundreds of thousands of babies are expected to be screened as part of the study, which will be led by researchers at the University of Oxford. The findings will inform a final recommendation by the UK National Screening Committee on whether SMA testing should be made a permanent part of the newborn screening programme.

Health Secretary James Murray praised the campaigners who had worked tirelessly to bring this issue to national attention. "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," he said, adding that he was "in awe" of those who had driven the cause forward.

A Message of Hope

For Nelson, the announcement carries profound personal meaning — even as she continues to navigate the challenges her own daughters face. "After years of campaigning, it means so much," she said. "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."

While the screening cannot alter the trajectory for children already living with SMA, Nelson acknowledged that it "marks the beginning of a brighter future for future SMA families" — a sentiment shared by the broader community of advocates, scientists, and healthcare professionals who have long championed this cause.