Stoke mother reveals son with Goldenhar syndrome’s abuse

A mother whose twin son was born with a severe face deformation has said other children would call him a Halloween monster and run away. 

Charlene Beswick has told of the heartache she felt at seeing others’ reactions to her son Harry, who was born with a rare condition called Goldenhar syndrome, which has left him with only half a face.

Ms Beswick, from Stoke-on-Trent, said she had a ‘brilliant pregnancy’ with her twin boys Harry and Oliver – who were both said to be happy and healthy babies.

Charlene Beswick, 38, pictured with her twin son Harry, 12, who suffers from Goldenhar syndrome, a rare chromosome abnormality

However, when she went into labour at 32 weeks she was stunned to learn that her son Harry had been born with a face deformity.

The rare condition meant her son had no eye, ear, nostril and an underdeveloped jaw, on one side – caused by a chromosome abnormality.

Harry has been under the care of medical experts at Alder Hey Children’s Hospital, in Mersyside, for the past 10 years. 

‘When I first heard of his condition, I was stunned and in complete disbelief. I didn’t think they had got it right,’ Ms Beswick said.

‘Then I just felt guilt and thought: ‘What have I done to him? Was it something I ate?’. I exhausted myself thinking what I had done.

Harry (right) pictured with his twin brother Oliver (left) shortly after their birth. The twins were born at 32 weeks, and as well as suffering from Goldenhar syndrome, Harry is autistic and nonverbal

Harry (right) pictured with his twin brother Oliver (left) shortly after their birth. The twins were born at 32 weeks, and as well as suffering from Goldenhar syndrome, Harry is autistic and nonverbal

‘Then I grieved and some parents won’t agree with that – but parents who have a child with special needs totally get it.

‘I grieved for the life he would never have. When you become a parent, you think about them having a girlfriend or boyfriend and wonder whether they will travel or what they will become and having those things taken away, I just felt really helpless.’

It was a week until Ms Beswick, now 38, got to meet her son Harry, who was immediately taken to Birmingham Children’s Hospital.

She admitted she suffered with post-natal depression after his birth.

But she added: ‘Even if I had known, I would not have terminated the pregnancy.

‘I was obviously very under-prepared but I had a brilliant pregnancy and I think, if I had known, I would have just been so worried throughout.

‘We look at scans now and Oliver’s profile is very defined but Harry’s is just one big mass. We just thought he had his head turned away.’

Ms Beswick has admitted that she suffered from post-natal depression after her sons' birth, and grieved for the life that Harry would not have

Ms Beswick has admitted that she suffered from post-natal depression after her sons’ birth, and grieved for the life that Harry would not have

She added: ‘I do remember just looking at him and seeing my failure… I was just numb.

‘I look back now and just wish I had been able to see him for what he was – which was a very gorgeous baby boy.

‘He had a big blue eye that was so twinkly and a gorgeous smile.’

On top of his facial disfigurement, Harry was diagnosed with autism and is nonverbal.

Ms Beswick, a supply teacher, said his condition has led to him being called names due to his appearance.  

Harry, pictured with his twin brother, has been under the care of medical experts at Alder Hey Children's Hospital, in Mersyside, since the age of two

Harry, pictured with his twin brother, has been under the care of medical experts at Alder Hey Children’s Hospital, in Mersyside, since the age of two

‘When he was a baby, children would cry and run away from him.

‘They would point and follow him around. He has been called a freak, a Halloween monster, ugly boy – he has been called a lot of names like that.

‘I am quite active on social media as well and we have had vile comments, one said he was an abomination of God.

‘But, because of his autism, he is largely unaware of these things, but it is hard for Oliver.

‘Oliver wants to protect him and it is really difficult for him at times. I deal with a lot of abuse on Harry’s behalf.’

Harry, now aged 12, has had to undergo many surgeries since he was born and has been under the care of staff at Alder Hey since he was two-years-old.

He has a prosthetic ear and a fake eye and will need further operations to reposition his eye and possibly construct a nasal passage.

Harry has a prosthetic ear and a fake eye and will need further operations to reposition his eye and possibly construct a nasal passage.

Harry has a prosthetic ear and a fake eye and will need further operations to reposition his eye and possibly construct a nasal passage.

Ms Beswick said: ‘We have such a laugh with his ear, he pulls it off and we even lost it the other week.

‘He is just such a loving, amazing boy. He has just got this way about him that people just love him, he is just incredible.’

She has also applauded the care of Alder Hey, which she said has been ‘fantastic’.

‘They have been great. They are very experienced and knowledgeable but they don’t pretend they can replicate what Mother Nature didn’t do.’

Ms Beswick, who said she now encourages people to ask questions about Harry’s condition, has also just published a book called: ‘Our Altered Life’. 

‘It has taken me about 10 years to publish this book because I would start and then stop writing it.

‘There are books on autism, there are books on parenting but there is nothing on coping with a child that looks different to what you expected.

‘And I just hope it helps other parents with that.’

  

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