A CALDICOT family have welcomed the UK government decision to add folic acid to flour products.

Folic acid is to be added to UK flour to help prevent spinal birth defects in babies.

Women are advised to take the B vitamin - which can guard against spina bifida in unborn babies - before and during pregnancy, but many do not.

Adding folic acid to flour could prevent up to 200 birth defects a year.

However, the new rules will not apply to gluten-free foods and wholemeal flour.

Paul Walbyoff's daughter Sara has an extremely rare condition called Currarino syndrome, which affects her spinal cord.

Shortly after her birth, she was diagnosed with talipes, or clubfoot.

This led to a relatively straightforward treatment, which included plaster casts and boots with a bar, all to help straighten her foot.

However, her parents then started to have other concerns with her health.

Sara’s mum, Liz took her to the GP and was referred to a consultant for tests and an MRI scan.

At the age of four and a half, Sara had a further diagnosis which suggested she had a rare form of spina bifida. As the condition was so rare, she was transferred to Great Ormond Street Hospital (GOSH).  

It was at GOSH that Sara’s consultant revealed her condition was in fact Currarino syndrome – a genetic syndrome causing abnormalities in the lower spine area.

Sara was one of only around 15 patients the consultant, Mr Dominic Thompson, had seen with this condition.

Mr Walbyoff said: “It was a worry that it was so rare, but we’d looked into Mr Thompson’s background and had seen that he’d conducted surgery in the womb for spina bifida.

"Having him on board gave us a good confidence boost that finally we could stop the condition from deteriorating further."

In December 2020, Sara was admitted to GOSH for an operation to de-tether her spinal cord. Despite the operation being a serious one, Ms Walbyoff said: “If we didn’t go ahead with it, we didn’t know how her mobility was going to fare. We didn’t want her to not be able to do all the things she loved, like her gymnastics.”  

The operation was a success and Sara has since been discharged from GOSH.


Folic Acid is recommended by NICE (The National Institute for Health and Care Excellence) as a supplement to be taken by women prior to and during pregnancy, as clinical evidence shows it helps to prevent the incidence of life-threatening and seriously debilitating Neural Tube Defects, including Spina Bifida.

More than 80 countries across the world, including the USA and Canada, have acted on this evidence to introduce folic acid into all flour and related products.

"As a family, we are pleased by todays announcement," said Mr Walbyoff.

"This step forward can only help families in the future who could have had a child born with a Neural Tube Defect (NTD).

"50 per cent of pregnancy is unplanned so by women of childbearing age having a level of folate in their diet, this can help to prevent a NTD.

"By the time a woman discovers she is pregnant, the Neural Tube is already being developed so the effect of folate is less effective on the babies development.
"Cereal is already fortified with folic acid so fortification of flour can only help too."

Newport East MP Jessica Morden has also been outspoken on the issue.

She recently brought the issue before Parliament - mentioning Sara Walbyoff's story.

She said: "My young constituent Sara Walbyoff, from Caldicot, lives with a rare form of spina bifida and this week has been meeting with Olympians and Paralympians at Great Ormond Street Hospital to talk about her experience of living with the condition.

"Sara’s family supports the campaign of Shine, the spina bifida charity, to fortify flour products with folic acid, which the Government have been consulting on now for two years. So please can the Government announce that they will do it?"

Mr Walbyoff said that Ms Morden had been "a great support" in the campaign for folic acid fortification.

"She has attended many debates and raised the issue with government ministers as well as attending a lobbying  day by the charity Shine," he said.
"October 18 - 25 is Shine Charity Spina Bifida Awareness week, so keep an eye on Shine's social media."