Rugby-mad schoolboy, 7, left with ‘crippling’ migraines and facing emergency skull rebuild
A boy has had skull surgery to treat a potentially life-threatening condition that doctors have repeatedly overlooked.
Luke Bedford, seven, from Dewsbury in West Yorkshire, has been suffering from ‘crippling’ headaches since he was able to speak.
His mother Joanne, 49, also repeatedly asked doctors why her son had an unusual head shape and a bulging lump.
But doctors dismissed Luke’s family’s questions, ignored his headaches and attributed his mood swings to “boredom and misbehavior.”
Luke Bedford, 7, struggled for years with his behavior and migraines due to craniosynostosis that left his head with an irregular shape
Luke pictured after surgery with the therapy dog at Great Ormond Street Hospital in London
Luke was finally referred to a specialist in December after a pediatrician stated something was ‘seriously wrong’.
The rugby-mad schoolboy was subsequently diagnosed with a rare form of craniosynostosis.
The condition occurs when bones in the skull fuse together sooner than expected, creating an abnormally shaped head.
It could mean there isn’t enough room for the brain to grow.
If left untreated, his brain could have grown too large for his skull – leading to blindness, developmental delays and seizures. It can be fatal, in extremely rare cases.
Headache and irritability are two symptoms of the condition.
Luke underwent a seven-hour surgery at Great Ormond Street Hospital in London last week to have his skull rebuilt.
Surgery usually involves making a cut across the top of a child’s head, removing and reshaping the affected areas of the skull, and fixing it back in place.
It is sometimes described as putting the skull together like a jigsaw puzzle.
Surgeons positioned 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 himself said they’re 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 year — because the front of his head will still be a little bit misshapen — they might have to have another surgery and rebuild the front of his head.”
After years of being told by doctors not to worry and to stop being an “anxious” parent, Luke’s mother Joanne is angry that she wasn’t taken seriously sooner.
Shannon, who has witnessed this for years, said, “Six years of his life my mother has been denounced as an overactive parent and she is to blame.”
Now that Luke has had to have 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 remember this.
“While he is now traumatized.”
She added: “We are physically heartbroken. That’s the only way to describe what he’s had to endure these past few months is heartbreaking.
“He still has a lot to do, he has his recovery ahead of him now.
‘He has a new life; a new image and it’s a lot to take in.’
With just six weeks between Luke’s diagnosis and surgery, Shannon and Joanne didn’t 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 journey, 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 raise money.
Now Luke is looking forward to getting back on the rugby field.
Shannon said: ‘It has really affected his rugby team, two months ago he was on the rugby pitch with all his teammates.
“It will be a while before he can get back on the rugby field, but his coach has kept him involved and said that Luke can be a coach too.”