A MOTHER’S intuition told Hayley Cook that something wasn’t right with her little baby, Hayden.

He had had to be delivered by forceps and his head was bruised and marked but she felt something else was wrong.

“I noticed a ridge on his head, but it was put down to it being a forceps birth,” says the full-time mum-of-five from Lordshill, Southampton.

“But by the time he was six weeks old, all the bruising from delivery had gone but the ridge was still there.”

Hayley’s health visitor referred Hayden to a paediatrician, who examined him and said there was nothing wrong, but Hayley was still concerned.

“As he got older the ridge turned into a dip going straight across the top of his head, from ear to ear, and our health visitor referred us back to the hospital,” she says.

“At first they said there was nothing to worry about but I wasn’t convinced, so they did an x-ray to give me peace of mind.

"Then I got a phone call to say that they wanted to do a CT scan, so I knew that something was wrong.”

The scan revealed that Hayden had craniosynostosis – a rare skull condition that causes a baby to be born with or develop an abnormally shaped head.

The plates in Hayden’s skull had fused too early and were stopping his brain from developing normally.

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A further test – an MRI scan – revealed that Hayden also had a chiari malformation type 1, meaning the lower parts of his brain were pushed down towards his spine.

Hayden was referred to the John Radcliffe Hospital in Oxford, where the decision was made to perform surgery on his skull, with it being cut from ear to ear.

“They basically rebuilt his skull,” says Hayley.

“They said it’s like putting Humpty Dumpty back together again.”

Hayley found the experience very tough.

Not only Hayden undergoing major surgery, she also had to leave her two youngest children with family in Southampton for two weeks while he had the surgery and recovered.

“It was awful,” she says.

“I was told that he would have to have a blood transfusion and that there was a risk of him having a stroke.

"After he had gone under, I remember I was just clutching his dressing gown.

"It was the longest seven and a half hours of my life, waiting to see him.”

When Hayley was reunited with Hayden, her relief that he had come through the surgery was tempered by the sight of him with deep cuts across his skull, tubes coming out of his head and wires over his body.

“I had to go out for ten minutes to cry and get some air,” she says.

Hayden’s surgery was a success and so far there is no indication that he will need any further operations.

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However, although he developed at a normal rate when he was small, hitting all his milestones, he is now severely developmentally delayed, and although he is seven and a half, is still at a pre-school learning level.

Hayley is glad that she stuck to her guns and got Hayden diagnosed, but wonders if he would have had better results if his condition had been picked up sooner.

“I’m always going to wonder what might have happened if he had been diagnosed with the craniosynostosis sooner,” she says.

“I wonder if he would have got the chiari malformartion if it was picked up. He might have been born with that, but he might not have.

“The best time to be diagnosed is when they’re a baby, so they can stop the pressure from building up on the brain and it being pushed down, so I’m always going to think: ‘What if they had given him an x-ray””

Hayley is speaking out about Hayden’s conditions because she wants to help raise awareness about craniosynostosis among health professionals and other parents.

“If parents notice something strange about their child’s head, they should get it checked out,” she says.

“I knew there was something wrong and went with that. He was my third baby and I knew the other’s hadn’t been like that and I hadn’t seen it in any baby.

"If he’d been my first I don’t know if I’d have realised.

“It’s really hard because I do see some children’s heads and think: ‘That doesn’t look right’ but you can’t go up to a parent and tell them that.

“Craniosynostosis only affects one child in every couple of thousand, but unfortunately, Hayden is one of them.”

For information and support, visit Headlines Craniofacial Support at headlines.org.uk and the Ann Conroy Trust at annconroytrust.org.