Health Secretary Wes Streeting has vowed to look into newborn screening for the condition after Jesy Nelson revealed the devastating news that her twins have spinal muscular atrophy.
Wes Streeting has vowed to look into singer Jesy Nelson’s call for newborn screening for a rare condition that leaves babies paralysed.
The Health Secretary responded to the former Little Mix singer’s revelation on Sunday that her twin babies, Ocean Jade and Story Monroe Nelson-Foster, had been diagnosed with spinal muscular atrophy (SMA). Families of infants left paralysed are demanding the Government adds a £5 blood test for the condition, previously known as “floppy baby syndrome”, to the newborn heel prick test.
Gene therapies can now prevent newborns with SMA being left paralysed but only if administered at birth before irreversible nerve damage has occurred. Speaking to ITV News, Mr Streeting said: “My heart goes out to Jesy Nelson and I think the way she has spoken about what must be an unimaginably frightening situation has been commendable.
She is correct in saying that she has asked us to improve our screening.
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The Mirror revealed in 2024 that around one baby every week is being left paralysed while the NHS delays a simple birth check for SMA. Every week that goes by untreated after birth sees the permanent death of nerves. Jesy, 34, shared her family’s ordeal in an Instagram video, describing “the most gruelling three/four months and endless appointments” leading to the diagnosis.
She said that heel pricks are all it takes to prevent the majority of this, which can be prevented from birth. There are many countries where it is possible to test a child’s ability with just a simple heel prick, but this is not in this country.
It literally can save their legs, so many body parts, and effectively prevent their deaths.
If babies do not have an older sibling with SMA they are currently usually diagnosed in England after parents repeatedly present to the NHS to report that their baby is not lifting its head or moving. Dozens of countries around the world added the SMA test to newborn screening in recent years.
The UK Screening Committee is currently planning a pilot which will see babies screened for SMA in some parts of England but not others. National rollout could take years. In contrast, NHS Scotland has already rolled out SMA screening to all babies.
Mr. Streeting continued, “Jesy Nelson is right to criticize and challenge the length of the process, and there is screening available.” And because of this, I’m determined to use genomic medicine much more effectively than just screening for SMA.
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Source: Mirror
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