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Parents Whose Baby Had Condition Where Her Tongue Constantly Stuck Out Raise Awareness After Doctors Fail Diagnosis

27/08/2015 10:53 BST | Updated 27/08/2015 10:59 BST

The parents of a baby whose tongue was permanently stuck out because of a congenital defect are desperate to raise awareness of the rare syndrome.

18-month-old Ocea Varney, who is a twin, suffers from Beckwith Wiedemann Syndrome - an overgrowth syndrome where infants are larger than normal - meaning her tongue wouldn't fit in her mouth.

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

Melanie Varney, 28, from Vancouver, Canada, who wants to raise awareness after doctors didn't diagnose her straight away, said: "You could even see Ocea's tongue sticking out on the ultrasound.

"When she was born it was the first thing I noticed - I thought it was cute at first, but it caused some serious complications."

baby

Ocea and Mum Melanie Varney

After her birth, along with twin sister Indigo, nurses kept Ocea in the Neonatal Intensive Care Unit (NICU) for a week to monitor her for low glucose levels.

Varney added: "The moment I gave birth to Ocea I thought she looked different to my other kids.

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

"When we were out at the store we would get comments about her tongue poking out - most of them said she was cute but others thought she was being rude.

"She was miserable with it - I would try and breastfeed her but she just couldn't latch on.

"It kept me up all night either trying or worrying."

Varney claimed after three months of doctors telling her and husband Gabby Mason, 30, it was just a phase, the family resorted to their own research.

From Googling her 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 14,000 babies worldwide - very few doctors knew about it.

Thanks to some further research, Varney found a specialist in Brisbane and made the 1,700km (1,000 mile) 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."

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The most common characteristics of BWS are a large body size, enlarged organs, enlarged tongue, midline abdominal wall defects and neonatal hypoglycaemia.

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

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

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

Varney added: "Our goal is to raise awareness about this syndrome.

"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."

To donate to the foundation, visit http://www.alexslemonade.org/campaign/beckwith-wiedemann-syndrome-fund-alsf

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