Little Girl Whose Tongue Wouldn’t Stop Growing Prepares to Start School

A four-year old girl who was born with a rare genetic condition which left her with an over-sized tongue is getting ready to start school after undergoing three operations over the course of the last few years.

Olivia Gillies of the UK was born with Beckwith-Wiedemann syndrome (BWS), a disorder that affects 1 in 12,000 newborns worldwide. It’s classified as an overgrowth syndrome and can result in abnormally large body parts, such as the tongue and limbs. It can also cause hearing loss and heart disorders in some cases.

Olivia’s parents discovered she had the condition during a routine scan when her mom was around seven months pregnant.

“We were told it was an overgrowth disorder – parts of Olivia’s body, including her internal organs, would be larger than normal” her mom, Emma Gillies, told the Daily Mail.

She recalls the first time she got to  hold her: “Her tongue was protruding from her mouth, but I wasn’t shocked. I loved her instantly,” she said.

During the first few months there were concerns about breast-feeding and her ability to breath properly, so the parents had to be very careful with her.

In September of 2010, Olivia underwent her very first tongue reduction surgery. She was six months old and had a tongue so large, it covered her chin. According to the Daily Mail, she also needed a tracheostomy to aid in her breathing.

Although the doctors and parents had hoped the single operation would be enough to resolve the problem, Olivia had to get two more surgeries – one in March of 2011 and another in March of 2012 – before doctors were able to confidently say that she she would develop normally.

Today Olivia is able to eat and breath unaided and is learning to talk.

“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” her mom reported, adding, “After everything that happened, she’s a very happy child.”

The slideshow above of Beckwith-Wiedemann syndrome pictures shows what the disorder can look like. Scroll through to see little Olivia’s transformation.
All images credited to