This little girl’s tongue wouldn’t stop growing after 3 corrective operations

A little girl born with a rare genetic condition which caused her to be born with an over-sized tongue is preparing to start school after three pioneering operations to correct the problem.

Olivia Gillies was born with Beckwith-Wiedemann syndrome (BWS), which affects one in 15,000 babies born in the UK.

Her mother Emma, 29, and father Ian, 40, were shocked when they discovered their unborn daughter’s condition during a routine scan.

But four years later the couple are preparing to wave Olivia off for her first day at primary school, after the youngster had three operations to reduce the size of her tongue.

Mrs Gillies and her husband, a chef, were allowed to take Olivia home on the understanding she would need operations to reduce the size of her tongue while she was still a baby.

She said: ‘When we brought her home our other children were over the moon. They were so happy to have their little sister with them for the first time.

‘Unfortunately I couldn’t breast-feed her. She had to be fed by a tube for a long time. There were concerns that the tongue would cause problems with her breathing, so we were quite cautious.

‘We took Olivia to a check-up appointment at Great Ormond Street when she was 15 weeks old and a cranio-facial consultant was concerned enough to admit her to a ward urgently.’

Olivia eventually underwent her first tongue reduction operation in September 2010, when she was six months old.

Mrs Gillies said: ‘By then her tongue was so large it was covering her chin. We knew she would need an operation eventually, but we didn’t know she would also need a tracheostomy.

‘To hear she would need such help to breathe came completely out of the blue and we were quite shocked.

‘She coped fine after the operation. She was already being fed through a tube so, unlike other children who have been through the operation, she didn’t have to cope with eating with stitches on her tongue.

‘We kept up with her painkillers and she got through it fine.’

Despite early hopes that a single operation would be enough to correct the problem, Olivia required two more operations in March 2011 and March 2012 before doctors were confident her tongue would develop normally.

In October 2012, Olivia’s tracheostomy was repaired and today she eats and breathes unaided.

Mrs Gillies said: ‘She was a little late walking and she is still learning to talk properly – family members can understand but strangers sometimes struggle to follow her. But she is hitting all her milestones more-or-less as expected.

‘I’ve also found good support on Facebook among families of other children with the condition, although it’s extremely rare for a child to have BWS and require a tracheostomy, as she did.

‘She’s extremely cheerful and loves playing with her brothers and sisters. She’s doing amazingly well at school, and has got lots of friends.

‘After everything that happened, she’s a very happy child.’