Dad of first baby given life-saving drug calls for NHS to test all newborns as standard

A dad says all newborns should be tested for spinal muscular ­atrophy so those who have it get the same lifesaving gene therapy that saved their baby son.

Arthur Morgan was five months old when he became the first NHS patient to get Zolgensma. Babies are offered the £1.8million treatment only after parents flag symptoms of the inherited condition, also known as floppy baby syndrome. The UK National Screening Committee has delayed rolling out a £5 blood test at birth which would identify SMA babies before irreversible death of motor neurons.

Arthur’s dad Reece said: “It’s crazy we have this treatment on the NHS but we’re not checking for SMA in the newborn heel prick test. If this treatment is given before babies are symptomatic it’s game-changing. It’s not fair families are having to go through what we did when the treatment is there.”

Arthur was the first patient in England to receive a potentially life-saving drug on the NHS

Before the family discovered the drug was being made available, doctors had told them Arthur would be unlikely to survive to his first birthday. Since having the one-off treatment in 2021, which was reported by the Mirror, Arthur no longer needs his feeding tube and has a chance at life. However, an estimated 48 babies a year are still paralysed because Zolgensma is offered too late.

Many will never walk, are fed through a tube and are hooked up to a machine to help them breathe at night. They require a machine to help them clear their throat, and a common cold can put them in intensive care for weeks – costing the NHS thousands. Arthur still requires an oxygen machine at night but can now eat normally. A frame helps him sit up but the family still hold out hope he will one day take steps unaided.

Plasterer Reece, 34, of South London, said: “This treatment has given Arthur life, which is the most important thing. It’s wonderful Zolgensma is now offered on the NHS but not testing for it at birth means it is like having a gun with no bullets.” The US, Australia, Japan, Russia and most of the EU have added the SMA check to their newborn screening test. Ukraine has even added a test for SMA in the middle of a war. Reece said: “I can’t imagine why there should be any further delay to screening.”