Remarkable story of little girl whose TONGUE wouldn’t stop growing – but now she can smile thanks to surgery
A toddler born with a condition that meant her tongue wouldn’t stop growing can now smile for the first time, thanks to surgery.
Baby Olivia Gillies nearly suffocated because her tongue suffered ‘accelerated growth’ – caused by Beckwiths Wiedemann Syndrome.
The disorder left her unable to eat or talk and strangers asked if she was sticking her tongue out at them.
But thanks to three rounds of surgery the syndrome is now under control.
Doctors spotted the unusual growth disorder, which can affect any area of the body, while she was still in the womb.
Olivia’s mother Emma, from Welwyn Garden City, Hertfordshire, was seven months pregnant with her fourth child when she and her husband Ian, 38, paid for a private 4D scan.
But during the scan the sonographer noticed the baby’s tongue was abnormally large.
She referred the family back to the hospital where further NHS scans confirmed Olivia was suffering with Beckwiths Wiedemann Syndrome.
Mrs Gillies, 27, said: ‘It felt like somebody had dropped a bomb. We were warned her tongue would be up to three times the size of a usual newborn baby and would keep growing. Nobody could tell us how big it would get. We were terrified.’
Mrs Gillies was booked in for a Caesarean section at 38 weeks but her waters broke the day before and she was rushed into theatre for an emergency operation on March 3rd 2010.
She said: ‘I didn’t get to see her when she was born because she was rushed straight to baby care to check her breathing. But my husband brought me a picture on my phone and my heart melted straight away.
‘Yes her tongue was very big and protruding from her mouth but she was just as gorgeous as my other children and I couldn’t wait to hold her.’
The size of Olivia’s tongue meant she couldn’t latch on to her mother’s breast, so she was tube fed and kept in hospital for the first six weeks of her life.
Back home her parents didn’t notice how quickly her tongue was growing, but at a check up aged 12 weeks doctors noticed it had got so big she was struggling to breathe.
Olivia was readmitted for emergency surgery to fit a tracheotomy – cutting a hole in the neck to access the windpipe – to help her breathe.
Mrs Gillies said: ‘I was distraught. Seeing her every day we just hadn’t noticed how much it had grown. To be told her life was at risk because her tongue was so big was devastating.’
Olivia remained on a ventilator until her breathing stabilised and was kept in hospital until she was well enough to undergo her first tongue reduction operation in September 2010 aged just six months.
She was finally allowed home four months later in January 2011 aged ten months old. Her father Ian gave up his job as a chef to become her full time carer, learning how to tube feed her.
But Olivia’s tongue continued to grow rapidly once again putting her life at risk and a second operation was scheduled for March 2011.
Mrs Gillies said: ‘It was frustrating for her because she couldn’t eat or talk but she did start to learn sign language to communicate with us and her brothers and sister.
‘The worst part was when people would stare. They obviously thought she was poking her tongue out at them.
‘Olivia is the sweetest little girl you could meet and would never dream of being rude or cheeky but her tongue had grown so big she couldn’t close her mouth let alone smile, talk or eat.
‘Our biggest fear was that she could suffocate.’
More reduction surgery in March this year was deemed a success and Olivia’s tongue finally stopped growing.
It meant that doctors could recently remove her tracheotomy and delighted Olivia now can’t stop smiling. She’s also learning to eat and talk, too.
‘We’d never heard of anything like it before and to be honest it sounded like something out of a horror film but we are so happy that the surgery has been a success because Olivia has a gorgeous smile and now she can’t stop flashing it.
‘We thought she was beautiful before but to see her smiling now melts my heart. She has been through so much and has always been such a happy little girl. But now thanks to her lovely smile it shows on the outside too.’