Belfast boy with Apert syndrome has face broken and rebuilt to save his life

October 12, 2016

Daire Flanagan was born with a rare condition known as Apert syndrome
It was caused by plates in his skull having fused too quickly in the womb
Doctors doubted he would survive as he struggled to breathe naturally
But last year he had surgery to allow him to breathe without assistance
Surgeons broke his facial bones and pulled them back using a metal frame

Stephen Matthews For Mailonline

Published:
08:04 EST, 12 October 2016

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Updated:
09:21 EST, 12 October 2016

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A six-year-old boy who has a rare condition which caused his head to double in size has had pioneering treatment to save his life.

Daire Flanagan, from Belfast, was born with Apert syndrome – where the plates of his skull fused too quickly in the womb.

It means his brain does not have the space to grow normally inside the skull, leading to an enlarged forehead, wide eyes and sunken features.

Doctors doubted he would survive when he was born and he has since undergone 20 operations to ease his breathing difficulties.

But after undergoing life-saving surgery which involved breaking his facial bones and pulling them back together with a metal frame, he is now flourishing.

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Daire Flanagan, from Belfast, was born with Apert Syndrome – where the plates of his skull fused too quickly in the womb. Doctors doubted he would survive when he was born and he has since undergone 20 operations to ease his breathing difficulties

His mother Colette said: ‘He was born on the Friday and when the doctors came in on the Monday they said they were surprised that he survived the weekend.’

‘When he was born his skull was fused over. He had to have his skull removed, reset and put back together like a jigsaw to allow the brain room to grow.

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‘He’s had lots of surgery throughout his life but he just gets on with it. He’s happy-go-lucky.’

Doctors were surprised Daire survived when he was born as they believed it would prevent him from breathing properly.

But after undergoing life-saving surgery which involved breaking his facial bones and pulling them back together with a metal frame, he is now flourishing

Surgeons performed a intensive operation which involved breaking his facial bones and pulling the middle part of his face forward by two centimetres – to allow him to breathe

His brain was being pushed out of shape and was crushing into his spinal cord.

But he defied experts and was given life-saving surgery at John Radcliffe Hospital in Oxford when he was one to release some of the pressure on his brain.

At the age of two he had an artificial airway implanted, which enabled him to breathe unassisted.

WHAT IS APERT SYNDROME?

Apert syndrome involves abnormal growth of the skull and the face due to early fusion of certain sutures of the skull.

Children with the condition have bulging eyes that are usually wide-set and tilted down at the sides.

They usually have problems with teeth alignment due to the underdevelopment of the upper jaw. Some have cleft palate.

Among other anomalies, children with Apert syndrome have webbed fingers and toes.

Early surgery can relieve the pressure that builds up inside the fused skull as the brain grows.

It affects one in every 100,000 babies.

Last year, surgeons performed a intensive operation which involved breaking his facial bones and pulling the middle part of his face forward by two centimetres – to enable him to breathe naturally.

He had to cope with a special framework on his face for several months to help pull his face together.

Following the surgery, it was revealed that the operation was successful and his brain was growing normally and his breathing no longer required assistance.

He has since learned to speak with the help of Makaton, a system which helps children with a mixture of signs and symbols to support their verbal communication.

Mr David Johnson, clinical director and leader of Oxford Craniofacial Unit, said: ‘The next objective for Daire is to have his tracheostomy removed.

‘We are looking at downsizing it to make sure he can breathe safely with it closed off, and then eventually remove it.

‘The goal is for Daire to breathe and feed normally, so he can live a very fulfilled life and really enjoy himself.’

Daire has just been presented with a Most Inspirational Youth Award in his home city for his bravery in dealing with all his operations.

His story appears in a new series of Body Bizarre tomorrow at 10pm on TLC.