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Medical miracles are part of Matthew's life
EVERY time 15-year-old Matthew Baker looks in the mirror he realises that the face looking back at him is the result of a medical miracle.
EVERY time 15-year-old Matthew Baker looks in the mirror he realises that the face looking back at him is the result of a medical miracle.Because Matthew's face is a reflection of his determined spirit, and the consummate skill of the surgeons who have helped him overcome the ravages of a condition that has afflicted no more than 100 people in the world.
Ever since he was born unable to breath through his mouth because of
a jaw that was not properly formed, medical experts have been building the teenager's features piece by piece.
One of his ribs has now become a section of his jaw, and two implanted orthopaedic plates and pins have been inserted behind his ears to stretch his features out.
Matthew, a pupil at Jack Hunt School in Netherton, Peterborough, was born with Nagar's syndrome, which meant he had just 30 per cent hearing, his radius and ulna were fused together in both arms and he had virtually no jaw and no thumbs.
Since then a special hearing aid has been cleverly anchored to a bone in his head and his index fingers have been remodelled to act as thumbs in a series of major operations at the Queen's Medical Centre in Nottingham and Great Ormond Street Hospital.
The story of Matthew's remarkable battle to face the world and fulfil his hopes and dreams emerged today when he was nominated as a Child of Courage in The Evening Telegraph's Pride In Peterborough Awards for 2007.
Just before Christmas the teenager, who dreams of a job in the police force or the chance to work with computers, underwent another critical operation to stretch his jaw and remove a tracheo-tomy tube.
Today his mum, from Orton Wistow, Peterborough, said she had been choked by the news her son had been nominated but bewildered by the attention over what has become normal life for both of them.
She said: "People who meet Matt really fall for him. He's shy at first until he gets to know you, but he's never said he can't do this or that – he just gets on with it."
When first faced with the news about Matt's condition, Elaine knew nothing about it and had to rely on the internet for information.
She said: "There were only about six people in the whole country who had it.
"To be quite honest, I'm glad we didn't know about the condition before he was born – if we had seen the medical books we would never have coped.
"All we were told when he was born was that his condition was so rare that there was no support group in England – they said the nearest condition to it was Treacher Collins syndrome, but we had never heard of that either.
"If you look in the doctors' medical books, the pictures are quite horrible, the poor souls. Thankfully, Matt has not got it that severe – in fact you might not even know, looking at him now."
Neither she nor the doctors had any idea, until the day he was born, that Matt had Nagar's syndrome as there was nothing to suggest it on the scans.
Babies have their hands clenched in the womb so it was impossible to see he had no thumbs and his facial deformities couldn't be seen either.
In fact, the surgeon who saved his life when he was born unable to breath, had never seen the condition in his entire career.
Born at Peterborough District Hospital, Matthew had to be fitted with an emergency tracheotomy tube because his tongue was obstructing his airway and stopping him from breathing.
The instrument normally used to open up the airway, a laryngoscope, was the wrong shape, so the surgeon, Dr Simon Tuck, raced back to his home in Stamford and adapted the instrument in a vice in his garage and then dashed back to the hospital – a move that undoubtly saved the boy's life.
Dr Tuck has since retired, but remembers Matthew well.
Speaking to The Evening Telegraph today, Dr Tuck said: "He's a very brave chap with a very brave mother – they have had a lot to overcome.
"I'm just an ordinary guy and I was just doing my job – you have to do what you have to do as situations present themselves. That's all I did.
"I think my contribution was very small – the real praise should go to the surgeons at Great Ormond Street and in Nottingham."
There is no doubt that Dr Tuck's actions saved Matt's life. And although he is very humble about what he did, it was just the start of an inspiring and courageous journey for Matthew and his family.
From the day he was born until he was two, Matthew relied on a tube in his throat to breath.
Elaine never gave up on trying to persuade doctors to find a way of removing it and giving Matthew a better quality of life.
After a long battle, a Great Ormond Street specialist agreed to try to reconstruct Matthew's face so he would be able to breath normally.
She said: "At first they didn't want to operate and said they wouldn't until he was a teenager or if he was teased at school.
"A consultant at Great Ormond Street disagreed and said it must be done – it was such a relief. It's very hard to push for an operation on a child, but we knew he needed it."
Operations and hospitals are now a normal part of Matt and Elaine's daily lives.
Elaine said: "Matt just gets on with it, really. I know if I had gone through what he's gone through I would be a right drama queen.
"When you see Matt and the other kids at Great Ormond Street it puts you to shame – we should all be grateful for what we have."
In fact, the teenager underwent one of the biggest operations of his life just before Christmas.
He had a tracheotomy tube removed, which was fitted so he could breath during an jaw operation, and further jaw surgery which involved having pins inserted behind his ears, which were turned on a daily basis to stretch his face.
He came out of hospital the week before Christmas.
Elaine said: "It wasn't nice for Matt or for me. To see your child going through that – we had to turn these pins each day to stretch his jaw."
Although devastating for both Matthew and his mum, they know that other victims of Nagar's have even more to contend with. Some are left with totally disfigured faces, a cleft pallet and, in the worst cases, have no ears.
Most dreadful of all is that this mask disguises people with brilliant personalities, skills and talents, who find themselves stared at, shunned and excluded because they are "different".
Matthew copes very well in a mainstream school, gets good results and is accepted by his peers and teachers alike.
Despite all the pain and discomfort he goes through, he rarely complains and wins everyone over with his wicked sense of humour.
Elaine said: "A few years ago, Matt said to me 'I wish I could have an extra finger, no hearing aid and be able to speak properly'. I was absolutely touched by that because other kids these days think they are hard done by if they don't have a PlayStation – and he just wanted those things."
Matthew, a brave, determined, bright and funny teenager was nominated for the Pride in Peterborough award by Carole Pinion, who has seen his battle for a normal life with all its ups and downs at first hand.
Carole was a teaching assistant at Jack Hunt School and worked with him for three years.
She has since moved on, but the pair have remained firm friends.
Carole said: "He works alongside his colleagues at school, although he's not been there since September because he has had more operations.
"The day I left the school I gave him a Mr Bean book and he sat in the corner chuckling away to himself. He has a wicked sense of humour.
"He was always so much fun to be around and we text each other now. He just has this way about him.
"He's so positive about everything, really. He's worth everything.
"A lot of the pupils really accept him. I would hate to cause him any distress, but he really deserves to be nominated."
The Pride in Peterborough awards will be handed out at a ceremony at the city's Marriott Hotel on Thursday, February 15.
If you know someone who deserves an award there is still time to nominate them for one of the nine categories.
Either cut out the form which appears regularly in The Evening Telegraph or download additional forms here.
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Wednesday 08 February 2012
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Comments
There are 2 comments to this article
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sfud
Friday, March 19, 2010 at 08:24 AMnice to have some good news
stephroberts86
Friday, March 19, 2010 at 12:17 AMI have a 3 year old boy Jake who also has Nager Syndrome. My son is only 3 years into his life long medical journey and reading Matthews story has given me insiration. Thank you.
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