As Jesy Nelson launches campaign for NHS to screen ALL newborns for spinal muscular atrophy at birth,these are the countries where it's offered as standard
The UK is a global outlier in relation to newborn SMA screening, which is currently in place within the United States and across most of Europe.
Former pop singer Jesy Nelson has called for the NHS to start screening newborns for a rare genetic condition at birth—just days after revealing her infant daughters have been diagnosed with a degenerative muscle-wasting disease.
Nelson, 34, who found fame as one quarter of X Factor girl band Little Mix, revealed on yesterday's This Morning that she feels that she has a 'duty of care' to raise awareness of spinal muscular atrophy (SMA) in the hopes that other parents can catch it early.
On Sunday, she announced that the twins she and her fiance Zion Foster welcomed in May, Ocean Jade and Story Monroe, have SMA1, the most severe form of the disease, and are unlikely to ever be able to walk.
Heartbreakingly for the couple, had their children been tested for SMA at birth, they could have undergone gene replacement therapy treatment which would have reversed the condition and allowed them to enjoy a normal, healthy, life.
Nelson is now campaigning for the condition to be added to the NHS' newborn blood spot screening test, also known as the heel prick test.
The test is offered to every baby at five days old, and involves taking a blood sample to find out if they have one of nine rare but serious health conditions, but at present SMA, which affects around 70 children born in the UK every year, isn't one of them.
The UK is a global outlier in relation to newborn SMA screening, which is currently in place within the United States (in all states bar Nevada and Hawaii), Russia, Turkey, Qatar, Taiwan and Ukraine.
Furthermore, all babies born in France, Germany, Switzerland, Portugal, Denmark, Belgium, Norway, Czech Republic, Slovakia, Lithuania, Latvia, Estonia and Hungary are tested.
Jest Nelson is campaigning for SMA to be added to the NHS' heel prick test
Other countries, such as Australia, Canada, Japan, Finland and Spain either offer the test regionally or are running pilot programmes with a view of rolling out screening nationwide.
Scotland has announced it will start screening babies for SMA from the spring, but the test is not currently available for newborns elsewhere in the UK.
There are four types of SMA, with 1 being the most severe - and frustratingly, the most crucial to catch early.
Giovanni Baranello, Professor of Paediatric Neuromuscular Disorders, Honorary Consultant in Paediatric Neuromuscular Diseases at Great Ormond Street, where Nelson's twins were diagnosed, told the Daily Mail that timing really is everything.
He said: 'Type one is the most severe form where you have an early onset, usually in the first few months after birth.
'Typically these children, without any treatment, will never acquire any major motor milestone, like sitting unsupported or standing or walking and they will just start to deteriorate progressively and to lose their strength.