Baby: William Evans

Parents: Katie Evans (mum) and Julie Evans (grandmother)

Location: Hereford

Little William Evans from Hereford was diagnosed with severe plagiocephaly in October 2006 – a flattening of the skull which affects around one in 30 babies in the UK.

The confident, outgoing baby, now 16 months old, is nearing the end of an advanced treatment programme to improve his head shape, and the results have been remarkable.

But as mum Katie and grandmother Julie recall, ignorance about plagiocepahly meant things could have turned out very differently. In fact, William’s condition was only diagnosed following a chance meeting in a local supermarket.

Julie recalled: “We first noticed William’s unusual head shape when he was four months old. We took him to our local GP on several occasions, and also mentioned our concerns to our health visitor. The advice we received from both parties was that he would grow out of it by the time he was two years old. Plagiocephaly was not mentioned once.”

Despite these reassurances, Julie and Katie remained unconvinced. William suffered from torticollis -  a tightening of the neck muscles – which his relatives felt could be contributing to the flattening of his skull. Meanwhile, his head shape had become so pronounced that it was spotted by a shopper in Julie’s local supermarket.

 “A lady approached me in the supermarket and asked if I had noticed William’s head shape,” said Julie. “She went on to tell me that her son had the same condition, and had been treated for something called plagiocephaly.”

Armed with this new information, Julie made an appointment with the Technology in Motion from Össur Centre in Cardiff – orthopaedic specialists offering  plagiocephaly treatment called STARband™.  The treatment uses a custom-made helmet, modeled from a 3-D scan of the baby’s head, which allows the baby’s skull to gradually reshape as it grows.

Clinicians at the centre diagnosed William with severe plagiocephaly, and Julie and Katie immediately began a fundraising campaign to pay for the treatment.

Julie said: “We didn’t have the money to pay for the STARband treatment outright, so we decided to fundraise. I went on local radio to talk about William’s condition and this led to an anonymous donation of five hundred pounds – which enabled us to get the treatment underway.

“We also held a charity auction and a jumble sale, and received a donation from my husband’s firm. By the time we had finished, we had raised enough money to help pay for another baby’s treatment too.”

To help William get used to wearing his STARband helmet, his mum and grandmother made it into a game. “We used to give it kisses, before putting it on, so that William would feel positive feelings towards his new ‘hat’,” said Julie. “The first few days were quite difficult, but since then, we’ve had no problems.”

The results have been dramatic. William’s asymmetry has nearly halved since he started treatment and he recently won the Hereford Baby of the Year competition, organised by the local paper.

Julie said: “We sent the paper a photo of William without his helmet on, and readers thought he was really cute. Winning the competition proved to us that William now looks like any other normal little boy. People who voted would never have guessed he once had severe plagiocephaly.”

She added: “STARband treatment was undoubtedly the right decision for William. It’s brought us peace of mind, knowing that he will grow up not feeling self-conscious. We are now doing all we can to make sure other parents know about plagiocephaly and how it can be treated – so that they don’t have to go through the same confusion that we did. “