Helmet heals Harry but NHS won't pay

9:35am Tuesday 8th May 2007

Comments (6)   Have your say »

BABY Harry was just six weeks old when mum Cara Terry began to realise something was seriously wrong.

His head was becoming increasingly misshapen and Miss Terry was growing concerned he would be left with a permanent deformity.

She and her partner, Steve Shannon, were told it was happening because Harry had a condition called torticollis, which meant he was always lying on one side.

Miss Terry, 21, said: "It's basically like a flat head on one side. It's caused by constant pressure on one side of his head.

"Just a few days after his birth, I said to my other half it was as if he had a neck brace on. I didn't realise he couldn't turn his head - I just thought he didn't want to."

Miss Terry, of Station Avenue, Prittlewell, started to notice there was a difference in Harry when he was three weeks old and, at six weeks, she raise her fears with her health visitor.

She then read a magazine article about a girl who was suffering from a similar condition, called plagiocephaly, and had been given a customised helmet to solve the problem.

She said: "I saw the article about the little girl and it said it can be caused by torticollis, where the child lies constantly with their head on one side.

"That's exactly what Harry does. If you turn their head, they don't want you to and it's uncomfortable for them."

The helmet is not routinely provided by the NHS so Miss Terry decided to go to a clinic at Wimbledon Park, in London, to have one fitted privately.

Staff there scanned Harry's head so they could make him a bespoke helmet, known technically as a cranial moulding orthosis.

Miss Terry explained: "They took a scan of his head shape and made the helmet to fit, leaving gaps where the head is flat, which encourages it to grow into the flat areas.

"It doesn't force it or push it at all, it just encourages it in the right direction. It really works."

Harry was fitted with the helmet, which is decorated with aeroplanes, on March 8. He must continue to wear it 23 hours a day for another five weeks.

Local people raised the 1,850 needed for the procedure. The Clouseaus pub, in Hamlet Court Road, Westcliff, raised £700 through a quiz night and the Open Doors charity shop, in London Road, Westcliff, raised a further £500.

Miss Terry also joined a website run by parents of fellow sufferers, where she learnt more about the condition, which is becoming increasingly common.

She said: "It's increased a lot since people have been told to put babies to sleep on their back. It wasn't really heard of when we were young, because we were told to sleep on our front.

"We realise, of course, it's best to put babies on their back to prevent cot death, but I think parents need to realise that although you put your baby on their back you need to alternate the side that the head is on."

Harry's parents are delighted with the effect the helmet has had on their son, who is now seven-and-a-half months old.

Miss Terry said: "It's amazing, the change. We had a review and his head looked so different.

"The woman said if we went in with his head as it is now she wouldn't class him as having a problem at all, and that was within seven weeks.

"If we had left him how he was, he would have had difficulties when he was older. He wouldn't have been able to wear headgear or sunglasses and there would have been the normal bullying at school."

However, Matt Rangue, deputy chief nurse for South East Essex Primary Care Trust, is not convinced by the procedure.

He said: "On previous investigation, insufficient robust clinical evidence was available to support funding this treatment.

"No assessment of evidence has been completed by the National Institute of Clinical Excellence into this treatment, as it falls outside of its remit."

But for Harry and hundreds of others, the helmet has proved a godsend.

For more information, go to plagiocephalycare.org.uk