- Olivia Gillies was born with Beckwith-Wiedemann Syndrome
- The overgrowth condition affects one in 15,000 births in the UK
- Emma and Ian Gillies discovered their daughter’s condition at a scan when the 29-year-old was seven months pregnant
- They could see Olivia’s overgrown tongue on the ultrasound
- The four-year-old is now preparing for her first day at school after three operations to reduce the size of her tongue, allowing her to learn to talk
04:22 EST, 20 May 2014
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07:53 EST, 20 May 2014
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.
Olivia Gillies was born with the rare genetic condition Beckwith-Wiedemann Syndrome, which caused her tongue to grow to an unusually large size. She is pictured in September 2010 preparing to go into the operating theatre for her first reduction surgery
Her parents Emma, 29, and Ian, 40, discovered their unborn daughter’s condition when they went for a scan seven months into Emma’s pregnancy. It affects around one in 15,000 births in the UK each year and is typically characterised by an enlarged tongue
Mrs Gillies, of Welwyn Garden City, pictured with her daughter shortly after she was born, said: ‘When Olivia was born I had less than a minute to hold her before she was rushed through to special care’
Mrs Gillies, of Welwyn Garden City, said: ‘When Olivia was born I had less than a minute to hold her before she was rushed through to special care.
‘It was difficult to be separate from her in those first hours, seeing the other parents on the maternity ward with their children.
‘Ian kept running between the wards, showing me pictures of her. I finally got to hold her eight hours later.
‘Her tongue was protruding from her mouth, but I wasn’t shocked. I loved her instantly.’
Olivia’s BWS was diagnosed after a scan at the Lister Hospital in Stevenage when Mrs Gillies was around seven months pregnant.
Mrs Gillies, a former admin assistant who has four other children, Amy, 15, Tiernan, 13, Hayden, six and Mia, three, said: ‘They could see her protruding tongue on the scan.
‘We were told it was an overgrowth disorder – parts of Olivia’s body, including her internal organs, would be larger than normal.
‘I went home and searched online for BWS. It wasn’t a very good idea, and it left me quite shocked. Information on websites often focuses on worst-case scenarios.’
Mrs Gillies said despite her newborn’s daughter’s tongue protruding from her mouth, she wasn’t shocked and ‘loved her instantly’
Since she was born Olivia, now four, has undergone three operations to reduce the size of her tongue
Olivia pictured in February 2011, after her first operation in September 2010, and shortly before going back into the operating theatre in March 2011, for the second procedure. It wasn’t until Olivia had been through her third operation in March 2012 that doctors were confident her tongue would develop normally
Olivia, pictured at Christmas last year, is now preparing for her first day at school
ONE IN 15,000 BORN WITH THE RARE GENETIC OVERGROWTH DISORDER
Beckwith-Wiedemann syndrome is a congenital overgrowth disorder, which can affect all parts of the body.
BWS is a rare genetic condition, affecting around one in every 15,000 births.
The figure is likely to be higher in reality, with mild cases rarely diagnosed.
Cases have been reported in most developed countries, and in the majority of cases it appears to be an isolated case with no known relatives suffering the disorder.
In some cases there is evidence the condition can be inherited.
Children with BWS are often born prematurely but are larger and heavier than expected, given their early arrival.
Typically a child born with BWS will have an enlarged tongue, which can causes breathing, feeding and speaking difficulties, as well as excessive dribbling. It can also cause respiratory problems and result in a protruding lower jaw.Â
Babies can be born with reddended skin on the forehead and eyelids, which usually fades in the first few years.
Children born with BWS are at risk of developing various types of tumours.
Around 7.5 per cent will develop a Wilms Tumour, a tumour of the kidney.
Due to the aggressive nature of these tumours, a child with BWS will need to be screened every three months until the age of seven or eight, when the susceptibilty to the tumours diminishes.
Children with the condition are also likely to suffer enlarged abdominal organs, overgrowth of one half of the body, liver tumours and an enlarged heart or heart defects.
BWS is diagnosed genetically in 80Â per cent of cases, with the remainder being diagnosed after a clinical examination.
Source: Beckwith-Wiedemann Syndrome Support Group
Beckwith-Wiedemann syndrome is a rare disorder caused by an imbalance in the genes governing growth rates.
Sufferers can experience problems with abdominal wall tissue, enlarged tongues, enlarged limbs and, in some cases, hearing loss and heart disorders.
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.
Olivia at her fourth birthday party in March this year. Her mother Mrs Gillies said: ‘We¿ve always been a close family, and we helped to keep each other calm during moments when we weren¿t clear on how things were going to turn out for Olivia’
Mrs Gilies said despite have some problems walking and talking, her daughter is hitting all her milestones as expected. She added: ‘After everything that happened, she’s a very happy child’
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.
‘We’ve always been a close family, and we helped to keep each other calm during moments when we weren’t clear on how things were going to turn out for Olivia.
‘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.’
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Happy Days,
Herts, United Kingdom,
1 hour ago
Stunning little lady with a beautiful smile. Wishing you all the very best for your future
Aunt Bessie,
Bradford, United Kingdom,
1 hour ago
Enjoy school Olivia and I hope you make lots of new friends xx
Her opinions only,
Kent _CAFC, United Kingdom,
1 hour ago
How adorable is that last picture of her, definitely bought a smile to my face.
diff29,
Cardiff, United Kingdom,
1 hour ago
What a gorgeous happy little girl
Tae,
Ashland, United States,
2 hours ago
I stand in awe of the human body, with which so many things can go wrong. Hats off to the doctors, I could never do their job.
digger,
oxford, United Kingdom,
2 hours ago
I’m more than happy for all the money I pay in tax to go towards cases like this. Bless her
WHATAWORLD,
CANTERBURY,
2 hours ago
WHAT AN ADORABLE LITTLE GIRL ALL THE BEST TO HER AND HER FAMILY
nikki 38,
west midlands,
2 hours ago
Beautiful young girl.
Jazzy1976,
London, United Kingdom,
2 hours ago
What a beautiful smile gorgeous little girl
Rafasbabe,
Scotland,
2 hours ago
Gorgeous little angel . Good luck Olivia xx
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