Wes Streeting has pledged to investigate singer Jesy Nelson’s plea for newborn screening for a rare condition that results in babies being paralyzed.
The Health Secretary addressed the former Little Mix member’s disclosure that her twin babies, Ocean Jade and Story Monroe Nelson-Foster, were diagnosed with spinal muscular atrophy (SMA). Families of paralyzed infants are urging the Government to include a £5 blood test for the condition, previously known as “floppy baby syndrome,” in the routine newborn heel prick test.
Advancements in gene therapies now allow for the prevention of paralysis in newborns with SMA if administered immediately after birth to avoid irreversible nerve damage. Mr. Streeting, speaking to ITV News, expressed empathy for Jesy Nelson and commended her for raising awareness about the challenging situation she faced.
The Mirror reported in 2024 that approximately one baby per week is left paralyzed due to delays in conducting a simple birth check for SMA within the NHS. Jesy, 34, shared her family’s struggle in an Instagram video, emphasizing the importance of early detection through a heel prick test to prevent severe consequences.
In England, babies without siblings with SMA are typically diagnosed only after parents repeatedly report developmental delays. Many countries globally have integrated SMA testing into routine newborn screenings in recent years.
While the UK Screening Committee is planning a pilot program to screen babies for SMA in certain regions of England, a nationwide implementation could take several years. Conversely, NHS Scotland has already introduced SMA screening for all newborns.
Mr. Streeting acknowledged Jesy Nelson’s valid concerns regarding delayed diagnosis and the availability of screening. He emphasized the need to explore not only SMA screening but also the broader utilization of genomic medicine to improve early detection practices.