Mum Moira tells us the story of Tom’s plagio journey…

We first noticed the back of Tom’s head flattening when he was about four weeks old. I’d seen a magazine advert for a pillow to guard against “flat head syndrome” which reminded me of an article I’d read on the subject a long time previously, where a little boy had worn a special helmet to correct a flattened head. It prompted me to look critically at Tom’s head and I was shocked to see that it was indeed flattening, across the whole of the back.

Tom was born with a beautiful round head. There was no reason for the flattening other than his preferred sleeping position – flat on the back of his head with little movement whilst asleep. He resisted all attempts to turn his head to the side whilst asleep.

We discussed our concerns at Tom’s various health checks and on other occasions with medical and health professionals. They confirmed he had a form of positional plagiocephaly (flattening to the head) called brachycephaly (a flattening across the whole of the back of the head) which should improve as Tom grew older and more mobile. No treatment was available via that route as it was deemed a purely cosmetic condition which should self-correct.

We tried to keep Tom off the back of his head as much as possible and to reposition his head whilst asleep but he was resistant and it was difficult. Our concerns only increased over time as the flattening worsened and so we started researching the condition.  

When Tom was five months old (the optimum time for treatment), we made an appointment to see Stephen Mottram at the Leeds Technology in Motion centre who provide the STARband treatment programme. Whilst repositioning had helped slightly, Tom’s head was still markedly misshapen, enough to attract attention, and we felt he may well need an extra helping hand.

Steve was lovely and immediately put us at our ease. He took Tom’s history and various measurements of his head to enable him to give a complete assessment of Tom’s condition. It transpired Tom had a very severe case of brachy (his head was actually wider than it was long) and slight plagio (flattening to the side of the head). Although we had suspected this, it was still hard to hear – we’d harboured a little false hope it might not be that bad.

Steve confirmed that in his opinion helmet treatment would definitely help Tom’s head round out to a much more normal-looking degree but he put us under no pressure whatsoever to make a decision there and then, or at all, to go ahead.  We had, however, pretty much made the decision to go ahead, if it would help Tom, before that first appointment, so Tom was scanned for his helmet, we chose the design (one of the trickiest bits!) and Tom collected his “magic hattie” a fortnight later.

Although we were fully committed to the process, we couldn’t help feeling apprehensive. It was not an easy decision to band our baby, but, given the severity of his condition, we knew it was the right thing for Tom. We knew we had to explore every option to help him. Helmet treatment is time limited, usually undertaken between the ages of around five and 24 months. We knew we wouldn’t be able to get that time back again.

If I am being honest, the first 7-10 days with the helmet were very fraught. Tom was one of the few babies who did not settle to the treatment quickly, and although he was fine once wearing the helmet, he hated having it put on or taken off. We persevered, however, saying we would give it another week and then we never looked back. Tom adjusted and never even seemed to notice the helmet was there! We put his name on the front and it certainly prompted a lot of (positive!) attention whilst we were out and about.

The treatment worked phenomenally well for Tom. He started his STARband treatment at 108% (106.5% by scan) brachy and 6mm plagio. He outgrew his helmet at the end of May 2006, when he was down to 94% and negligible plagio (around 1mm). We then decided to go ahead with a second helmet in order to achieve the maximum possible correction for Tom, given the initial severity of his condition. 

Finally, after more than 12 months of treatment and two helmets, Tom officially graduated on 15 February this year with a lovely, curved head. It looks "normal" and no-one would ever know there had been a problem. We are thrilled with the outcome. For those interested in the numbers, his final measurement was 88.5%.

Stephen Mottram added his thoughts, “Tom’s head growth responded exceptionally well to STARband treatment and in the first band, he grew 20mm front to back, with negligible width growth and a further 10mm in the second band. This is a total of 30mm front to back, but only 2mm in width.

“I am convinced that without help, this result would definitely not have happened naturally. We have won time back for Tom and there is no concern that his head shape will ever go back to the original shape.”

• View the BBC feature on Tom's plagiocephaly (1575kb wmv)