Baby girl born with her TONGUE constantly poking out undergoes surgery

A baby born with her tongue constantly poking out due to a rare genetic condition has undergone surgery so it can fit in her mouth.

Ocea Varney, 18 months, suffers from Beckwith Wiedemann Syndrome (BWS), a congential overgrowth disorder.

Even before she was born in Cairns, Australia, Ocea showed signs of BWS - which affects one in 13,700 newborns worldwide - with her tongue clearly visible on the ultrasound.

Despite some doctors assurances that the condition would sort itself out, her mother Melanie, 28, knew there was a more serious going on.

Doctors, nurses and even strangers told her not to worry as it looked 'cute', but Mrs Varney knew Ocea was bigger than her twin sister and her oversized tongue caused complications with feeding.

After Ocea was born, along with twin sister Indigo, nurses kept her in the neonatal intensive care unit for a week to monitor her low blood sugar levels – a sign which Mrs Varney later learned is a characteristic of BWS. 

'The moment I gave birth to Ocea I thought she looked different to my other kids,' she said.

'Obviously she had her tongue sticking out, but she was bigger than her sister.’

From Googling their daughters' symptoms they came across another girl with a similar story who had been diagnosed with BWS.

Despite it being a common condition - affecting one in 13,700 babies worldwide - very few doctors knew about it.

The most common characteristics of BWS are a large body size, enlarged organs, and an enlarged tongue, which may interfere with breathing, swallowing and speaking.

Some babies may have creases or pits in the skin near the ears, and defects with their abdominal wall, such as a soft pouching-out of the stomach around the belly-button.

Children with BWS are also at an increased risk for developing various types of tumours, particularly liver and kidney tumours, and as many as 20 per cent of babies born with the disorder will develop cancer.

After further research, Mrs Varney found a specialist in Brisbane and made the 1,000 mile (1,700 km) trip.

She said: 'As soon as the doctor saw her, he told us it was BWS - it was heartbreaking to hear she had the condition.

'But after three months, at least we finally had a diagnosis and could start doing something about it.

'She instantly had blood tests to check whether she had any tumours, which she didn't.'

Mrs Varney and her husband Gabby moved their twins and their two-year-old son Joey back to Canada so they could be closer to her family.

At just seven months old, Ocea had tongue corrective surgery in Missouri and they continue to visit the hospital every six weeks to be screened for tumours.

Shortly after Ocea's diagnosis, Mrs Varney created a website with the help of her friend Tricia Surles - whose two-year-old daughter Lane also has the condition - to inform and educate families and health professionals.

On Friday August 28 they have arranged a How Big Is Yours? Day which encourages people to post selfies of themselves sticking their tongues out with the hashtag #howbigbws.

'Our goal is to raise awareness about this syndrome,' Mrs Varney said.

'Up to a quarter of sufferers develop cancer so it's important that an early diagnosis is made.

'We want doctors to recognise BWS and ensure families know there is a support network out there for them.

'If that means getting people to pull a silly face then that's worth it.'

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