A child’s parent is holding “years of delays” responsible for their child’s severe disability due to the NHS not screening for a muscle wasting disease at birth. The Mirror has initiated a campaign for spinal muscular atrophy (SMA) inclusion in the NHS newborn heel prick test, a practice already adopted in most developed countries. Ollie Williams, a five-year-old, faced significant health challenges as he had to wait three months post-birth for his SMA diagnosis, resulting in irreversible damage to his motor neurons.
Ben and Amy, Ollie’s parents, are advocating for broader newborn screenings to avoid repeating tragedies like Ollie’s. The UK National Screening Committee has postponed the implementation of the £5 blood test nationwide, opting for a pilot program in select regions of England and Wales, while Scotland plans to roll out the screening to all babies this spring.
Ben criticized the committee for prioritizing data over timely decisions, citing delayed diagnoses like Jesy Nelson’s twins as proof of the system’s shortcomings. Jesy, a former Little Mix singer, revealed that her newborn twins were diagnosed late with SMA, a condition that might prevent them from walking.
Ollie and Jesy’s twins have Type 1 SMA, the most severe form, requiring extensive medical support for daily activities. Ollie’s family, whose story was first covered by The Mirror in 2024, recently welcomed his seven-month-old sister, Hailey, who underwent SMA screening due to having an affected older sibling.
Despite both parents being SMA carriers, Hailey tested negative, relieving Amy but also stirring feelings of guilt for not detecting Ollie’s condition earlier. The family’s journey shed light on the lack of awareness surrounding SMA and the necessity for universal newborn screenings.
The Mirror’s ongoing advocacy emphasizes the importance of SMA screening in preventing unnecessary disabilities in children. Novartis estimates that delayed diagnoses leave 33 UK babies annually wheelchair-bound. While the UK screens for ten health conditions in newborns, other countries screen for a broader range, making the UK an outlier in newborn SMA screening practices.
The UK National Screening Committee’s decision-making process has faced criticism for causing unnecessary delays in implementing SMA screenings. While the committee calls for further research, NHS Scotland has taken proactive steps to introduce SMA screening for all newborns starting this spring.
In response to concerns, the Department of Health and Social Care highlighted ongoing efforts to enhance newborn screening protocols and provide timely support to affected families. The commitment to early detection and treatment for SMA remains a priority to minimize long-term health impacts on children.
