Baby Boy, Ollie, Called 'Real-Life Pinocchio' After Brain Grows Into Nose Due To Rare Condition Encephalocele
A toddler in the UK is being described as the “real-life Pinocchio” after a rare condition left him with a bulbous nose. Twenty-one-month-old Ollie Trezise, from Wales, was born with encephalocele, a condition which caused his brain to grow through a crack in his skull into his nose. Ollie has undergone several painful surgeries at Birmingham Children’s Hospital to enable him to breathe.
"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. 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,” mother Amy Poole told the Mirror.
The mother of two first discovered something was different about Ollie at her 20-week scan, when doctors spotted an unexpected soft tissue growing on his face. She remained in shock by his condition when she gave birth in February 2014 at Cardiff University Hospital in Wales.
She recalled: “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.”
The toddler has been bullied for his rare condition, as Poole added, “a woman told me I should never have given birth to him. I nearly burst into tears.”
An MRI scan later confirmed that the lump on the boy’s nose was a birth defect known as encephalocele. This rare type of neural tube defect is present at birth and affects the brain. It happens when the neural tube does not close completely during pregnancy, leaving an opening in the midline of the upper part of the skull, the area between the forehead and nose, or the back of the skull, according to the Centers for Disease Control and Prevention.
Martin Evans, a clinical lead for craniofacial surgery at Birmingham Children's Hospital, told the Mirror: "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 will need further operations in the future, but doctors are still waiting to see how his skull develops before performing any more invasive surgery.
Poole is glad to call Ollie her "special little Pinocchio" and says she "will never stop loving him."