As of 1 October 2026, NHS England has begun rolling out newborn screening for spinal muscular atrophy (SMA) across the West Midlands. The long-term ambition is to offer the test to all newborn babies across England. This marks a significant step forward in the early detection of SMA, allowing babies to access treatment before symptoms appear and before irreversible damage occurs.

What is spinal muscular atrophy (SMA)?

Spinal muscular atrophy is a rare inherited genetic condition that causes the motor neurons responsible for muscle movement to degrade. This leads to severe muscle weakness.

It affects around one in every 10,000 babies born in the UK. The condition causes progressive muscle weakness and can affect a child's ability to sit, crawl, walk, swallow and breathe. It can also cause tremors as well as bone and joint problems such as scoliosis. In its most severe form, SMA can be life-limiting and may result in serious respiratory complications.

How will babies be screened for SMA?

The new screening test will be incorporated into the routine newborn blood spot screening programme, often referred to as the "heel prick test". A small sample of blood is collected from the baby's heel shortly after birth and analysed for specific genetic and metabolic disorders.

This test is already offered to newborn babies to screen for several serious conditions. Under the new programme, SMA will be added to the list of conditions being assessed. Currently the heel prick test screens for cystic fibrosis, congenital hydrothyroidism, sickle cell disease and inherited metabolic diseases.

Why is early diagnosis of SMA so important?

While there is no cure, early treatment before symptoms develop can prevent irreversible damage to motor neurons. Once motor neurons are lost, they cannot be regenerated.

One of the greatest challenges with SMA is that symptoms can develop rapidly, sometimes before a diagnosis has been made. By incorporating SMA screening into the newborn heel prick test, this ensures that intervention takes place as early as possible, giving babies the best possible chance of avoiding serious and permanent deterioration.

Research has shown that babies diagnosed and treated before symptoms emerge often experience significantly better outcomes than those diagnosed later. Early intervention can help preserve muscle function, improve mobility and quality of life, and in some cases enable children to reach developmental milestones that may not otherwise have been possible.

The Government has estimated that the new screening programme could prevent around three deaths per year, prevent two babies from needing permanent ventilation, prevent 30 babies from being confined to sitting, and enable 37 babies to live largely normal lives, when they otherwise may not have been able to.

Impact on families

Many families who have campaigned for newborn screening have spoken about the difference that earlier diagnosis could have made to their children's lives. This includes former Little Mix singer Jesy Nelson who has been a prominent voice in the campaign for screening after sharing the news that her twin girls were diagnosed with SMA in January this year.

Patient organisations and campaign groups, including SMA UK and Muscular Dystrophy UK, have welcomed the rollout, describing it as a landmark moment for the SMA community and a major step forward in improving outcomes for affected children.

What does this mean for healthcare standards?

The expansion of newborn screening reflects the growing recognition that prompt diagnosis is critical when treating genetic conditions. As screening programmes evolve and new technologies become available, healthcare providers have an increasing ability to identify serious conditions at the earliest possible stage.

Where opportunities for early diagnosis exist, it is vital that screening programmes are delivered safely, effectively and consistently. Families place enormous trust in healthcare professionals to identify potential concerns and ensure appropriate referrals and treatment pathways are followed. Early detection initiatives such as SMA screening demonstrate the profound impact that timely diagnosis can have on long-term health outcomes.

I welcome the new changes and encourage the nationwide implementation of SMA screening so that all families are able to reap the benefits of early detection and treatment.