Babies 'Forgotten' in Disease Screening Snub

By the Editorial Team · Wednesday, June 24, 2026

Jesy Nelson campaigned at a parliamentary debate urging the UK government to expand newborn screening for spinal muscular atrophy (SMA) to all babies, highlighting the life-saving importance of early diagnosis for her twin daughters and others affected. The discussion revealed ongoing tensions over screening policies, with critics warning that current limitations leave many infants untreated and vulnerable based on geographic location, while health officials call for careful evaluation before changes are made.

Jesy Nelson expressed strong frustration following a parliamentary debate in Westminster on Monday concerning the expansion of newborn screening for spinal muscular atrophy (SMA), a severe genetic disorder that causes muscle wasting. Nelson, whose twin daughters Ocean Jade and Story Monroe have been diagnosed with SMA Type 1, attended the session as part of her campaign to urge lawmakers to extend disease screening to all newborns.

Currently, approximately 404,000 babies in the United Kingdom are tested for SMA shortly after birth. However, an additional 163,000 infants will not be screened as they form a “control group” necessary for comparative research. Nelson and other campaigners argue this approach leaves many children vulnerable, as the most effective treatments must be delivered at birth to prevent severe disability.

Nelson, a former member of the pop group Little Mix, highlighted the critical time sensitivity of treatment and the uneven access based on geographical location. Speaking on ITV’s This Morning, she described feeling “absolutely fuming” and “so let down” by the decision. She emphasized the injustice of a system that potentially determines a child’s health outcome depending on where they are born, adding, “Our children’s lives could look so different.”

The debate has sparked significant public and advocacy concern, with campaigners linking delays to political changes within the Department of Health. Giles Lomax, head of SMA UK and parent to eight-year-old twins with the condition, remarked that since former Health Secretary Wes Streeting’s resignation — who had pledged to consider extending screening — at least a dozen babies with SMA have been “forgotten” by the current screening policies.

Health Minister Sharon Hodgson underscored the need for careful consideration in expanding national screening programs. She stated that decisions must be based on a thorough assessment of risks and benefits to ensure that new protocols will provide more overall advantage than harm.

The debate continues to spotlight the challenges in balancing comprehensive health screening with the practical and ethical considerations of national health policy. Advocacy groups remain hopeful that ongoing public pressure and political engagement will lead to broader implementation of SMA newborn screening to improve early diagnosis and outcomes for affected infants.

This article was reported by synthesizing coverage from multiple independent news outlets to present a balanced, unbiased account. Read about our editorial standards. Spotted an error? Let us know.