- Ollie Trezise, 21 months, was born with a defect called an encephalocele
- It causes the brain to grow through a hole in the skull, creating a ‘sac’
- Doctors first noticed the soft tissue forming during a 20-week scan
- He has undergone several painful operations to correct the defect
A toddler whose brain grew inside his nose has been described as the ‘real-life Pinocchio’ by his proud mother.
Ollie Trezise, from Maesteg, Wales, was born with a rare condition which caused his brain to grow through a crack in his skull into his nose.
The 21-month-old has been forced to undergo several painful operations to help him to breathe and close the gap in his skull.
Ollie Trezise has a rare defect called encephalocele, where a sac-like protrusion or projection of the brain and the membranes that cover it, come through an opening in the skull
But his mother, Amy Poole, 22, said the brave youngster has been bombarded with cruel comments from strangers.
One even said he ‘should never have been born’ while other taunted him, calling him ‘ugly.’
‘It’s absolutely heart-breaking,’ said the full-time mother-of-two.
‘Once, a woman told me I should never have given birth to him. I nearly burst into tears.
‘To me, Ollie is perfect. He is my little real-life Pinocchio and I couldn’t be prouder of him.’
Miss Poole first discovered that something was different about Ollie at her 20-week scan when doctors told her he had unexpected soft tissue growing on his face.
However, she was still shocked by his condition after giving birth to him at the University Hospital of Wales in February 2014.
Miss Poole, who has since split from Ollie’s father, said: ‘When they gave me Ollie to hold, I was so surprised that I almost couldn’t speak.
‘He was so tiny, but there was this enormous golf-ball sized lump on his nose.
‘At first I wasn’t sure how I would cope. But I knew that I would love him no matter what he looked like.’
Ollie has had several operations to fix the opening in his skull, causing part of the brain to grow through the gap
Doctors picked up the soft tissue growing on his face during the 20 week scan, left. Despite being warned of his condition, mother Amy Poole said it still came as a shock when he was born last year
The defect is extremely rare with just 1.7 in every 10,000 births in the UK. It is caused by part of the skull not fusing properly but is more common at the back of the head
An MRI scan later confirmed that the lump was an encephalocele – a defect that causes the brain to grow through a hole in the skull, creating a protruding sac.
WHAT IS AN ENCEPHALOCELE?
Encephaloceles are rare birth defects associated with skull defects caused by partial lacking of bone fusion leaving a gap through which a portion of the brain sticks out (protrudes).
In some cases, cerebrospinal fluid or the membranes that cover the brain (meninges) may also protrude through this gap.
The portion of the brain that sticks outside the skull is usually covered by skin or a thin membrane so that the defect resembles a small sac.
Protruding tissue may be located on any part of the head, but most often affects the back of the skull (occipital area).
Most encephaloceles are large and significant birth defects that are diagnosed before birth.
However, in extremely rare cases, some encephaloceles may be small and go unnoticed.
The exact cause of encephaloceles is unknown, but most likely the disorder results from the combination of several factors.
Incidences are rare with about 1.7 in every 10,000 births in the UK.
Encephalocele treatment in most cases is surgery to put the part of the brain that is outside the skull back into place and close the opening.
Neurosurgeons often can repair even large encephaloceles without causing the baby to lose further ability to function.
In Ollie’s case the sac had grown on his nose, causing it to stick out.
Over the next nine months, as Ollie’s body grew, so did his nose – just like Pinocchio.
Doctors told his terrified mother that they needed to operate on him to open up his nasal passage and enable him to breathe properly.
‘I was so scared to let Ollie undergo such major surgery. He was so fragile, and I couldn’t bear the thought of losing him,’ she said.
‘But doctors explained that he was at risk of contracting an infection or even meningitis if he tripped and knocked his nose – so I agreed to the surgery.’
In November 2014, he underwent the successful two-hour operation at Birmingham Children’s Hospital.
The surgery involved cutting open his skull to remove the excess sac of brain fluid and rebuild his nose.
Due to the rarity of the condition, treatment is only available at Birmingham and three other specialist centres in the UK: Great Ormond Street, Alder Hey Children’s Hospital in Liverpool and The John Radcliffe Hospital in Oxford.
His mother said: ‘After the operation, Ollie had a huge zig-zag scar across his head. He must have been in so much pain, but he just kept smiling and laughing.
‘His positivity made it so much easier for me.’
Now fully recovered, Ollie is a bubbly little boy who loves splashing in his paddling pool and playing with his four-year-old sister, Annabelle.
Miss Poole said: ‘He is such a character and always has me in fits of laughter. Plus he and Annabelle are best friends – they’re always getting up to mischief.
‘Annabelle is even jealous of Ollie’s nose as it gets him lots of attention. Sometimes I catch her grabbing it when she thinks I’m not looking.’
Ollie was born with an encephalocele – where part of his brain was coming through a gap in his skull
Ollie has always been a smiley boy, his mother says, despite having to go through several operations
Ollie, who is now 21 months old, before surgery to fix his condition, pictured with his sister Annabelle, four
The toddler has been subjected to cruel taunts by strangers with one saying mother Amy (right) ‘should never have had him.’ She is telling his story to raise awareness and stop others being bullied
His mother is now keen to spread awareness of the condition to prevent other children from being bullied.
She said: ‘I don’t want other kids to face the nasty comments that Ollie has, and I think the best way to combat this is by educating people.
‘I’d much prefer if people asked me why Ollie looks the way he does, rather than just telling me is ugly or pointing and staring.’
The youngster will need further operations in the future but doctors are waiting to see how his skull develops before performing any more invasive surgery.
‘We have regular check-ups at the hospital, and things are going really well.
‘Ollie will probably never look like all the other children and I’m terrified that he will be bullied at school. But he is such a lovely boy that it’s impossible not to adore him.
‘I think he is absolutely perfect the way he is. There is nothing wrong with being different.
‘Ollie is a unique, clever, funny little boy and he amazes me every day. He is my special little Pinocchio, and I will never stop loving him.’
Martin Evans, clinical lead for craniofacial surgery at Birmingham Children’s Hospital, said: ‘Cases like Ollie’s are incredibly rare. I see perhaps one per year.
‘We are very pleased that the operation was a success, and wish him all the best for the future.’
Ollie’s mother, Amy Poole, 22, said: ‘He is such a character and always has me in fits of laughter’
Ollie has undergone several painful operations at Birmingham Children’s Hospital to fix the condition
The 21-month-old has regular check-ups at the hospital and doctors are pleased with his progress