Doctors dismissed my boy’s headaches and put his mood swings down to ‘boredom’ – so we were horrified to discover the real cause was life-threatening
- EXCLUSIVE: Luke went into surgery for seven hours to fit metal plates in his skull
- Rare form of craniosynostosis caused his skull to fuse too early when growing
- Luke’s mother told she was an ‘anxious’ parent for worrying about his condition
A boy has undergone skull surgery to treat a potentially life-threatening condition that doctors repeatedly missed.
Luke Bedford, seven, from Dewsbury in West Yorkshire, has suffered with ‘crippling’ headaches ever since he was able to speak.
His mother Joanne, 49, also repeatedly questioned doctors on why her son had an unusual head shape and a bulging lump.
But medics dismissed Luke’s family’s queries, dismissing his headaches and putting his mood swings down to ‘boredom and misbehaviour’.
Luke Bedford, 7, struggled with his behaviour and migraines for years due to craniosynostosis which caused his head to form an irregular shape
Luke pictured after surgery with the therapy dog at Great Ormond Street Hospital in London
Luke was eventually referred to a specialist in December after a paediatrician stated there was something ‘seriously wrong’.
The rugby-mad schoolboy was then diagnosed with a rare form of craniosynostosis.
The condition occurs when bones in the skull fuse together earlier than expected — causing an abnormally-shaped head.
It can mean there is not enough room for the brain to grow.
If left untreated, his brain could have grown too big for his skull — which could have led to blindness, developmental delays, and seizures. It can be deadly, in extremely rare cases.
Craniosynostosis: What is it and what are the signs?
Craniosynostosis is a rare condition that causes a baby’s skull to not grow properly.
Their head can become an unusual shape and although in some cases it does not need to be treated in other surgery is needed.
Surgery is needed if it is likely to affect how your child’s brain grows. It is also needed if pressure on the brain causes headaches or if it is affecting their face and causing breathing difficulties.
What are the signs to look out for?
Babies’ heads come in all shapes and sizes and it is normal for their head to be a slightly unusual shape. This unusual shape often gets better as they grow.
But if your baby has craniosynostosis you my notice:
- Their head is long and narrow
- Their forehead is pointy or triangular
- One side of their head could be flattened or bulging out
- The soft spot on the top of their head (fontanelle) disappears before they are one years old.
- Their head may seem small compared with their body.
Headaches and irritability are two symptoms of the condition.
Luke last week underwent a seven-hour operation at Great Ormond Street Hospital in London to have his skull rebuilt.
Surgery usually involves making a cut across the top of a child’s head, removing and reshaping the affected parts of the skull and fixing it back in place.
It is sometimes described as piecing the skull back together like a jigsaw.
Surgeons fitted his head with metal plates and screws and removed an enlarged and damaged vein that ran along the top of his head.
But medics were only able to rebuild the back of Luke’s head, meaning more surgeries will be needed.
‘The surgeon said themselves that they are glad they did the surgery when they did because it was really compressed, there wasn’t really any room left,’ said Luke’s older sister Shannon, 24.
‘They said in about a years’ time — because the front of his head is still going to be misshapen a bit — they may need to re-operate and rebuild the front of his head.’
After years of being told not to worry and to stop being an ‘anxious’ parent by medics, Luke’s mother Joanne is upset she was not taken seriously sooner.
Shannon, who has been a witness to this for years, said: ‘For six years of his life my mum has been made out to be an overactive parent and she has been made out to be the blame.’
Now after Luke has had to go through life-changing surgery, Shannon wishes he had the surgery years ago.
She said: ‘We are upset because this could have been operated on when he was two years old and he wouldn’t have remembered this.
‘Whereas now, he is currently traumatised.’
She added: ‘We are physically heartbroken. That is the only way to describe what he has had to go through these past couple months is heartbreaking.
‘He has a lot to come, he has his recovery now ahead of him.
‘He has a new life; a new image and it is a lot to take in.’
With only six weeks between Luke’s diagnosis and surgery, Shannon and Joanne did not have time to save enough money to pay for the travel and hotel costs of the trip from Dewsbury to London.
To help them make the trip Shannon set up a Gofundme page which raised £1,500, with help from Luke’s Thornhill Trojans rugby team coach who ran a half marathon to help fundraise.
Now Luke is looking forward to getting back out onto the rugby pitch.
Shannon said: ‘It has affected his rugby team massively, two months ago he was on the rugby field with all his teammates.
‘It will be a while before he can get back out onto the rugby pitch, but his coach has kept him involved and said that Luke can be a coach as well.’
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