Riley DiGiorgio

Mum Donna DiGiorgio from Roundswell, Barnstaple, is a relieved woman after finding a treatment programme to cure baby son Riley’s severe ‘flat head syndrome’.
Ten-month-old Riley is now being treated for the condition at a specialist centre in Cardiff, but Donna is still trying to work out why her local NHS trust didn’t think it was a cause for concern. Plagiocephaly, or flat head syndrome, affects 1 in 30 babies in the UK.

Appalled at the disregard of her son’s flat head syndrome (plagiocephaly) from NHS staff at North Devon District Hospital, Donna is keen to raise awareness of her experience so other parents don’t have to go through the despair that she has.

Donna says: “Riley’s head shape was flat like a table at the back, flat on the left and bulbous on the right hand side. To be told time and time again by professionals that this problem will ‘sort itself out’, when you can see that the problem is worsening is heartbreaking.”

Riley was born on 31st May 2007 and was five weeks premature. He has been regularly seen by specialists ever since, mainly to monitor progress after his birth as he suffered from glue ear and chest issues. But he was never given an appointment for a paediatrician to look at his plagiocephaly condition until he was eight months old, even though Donna brought this up at every appointment.

At each check-up Donna mentioned that her son’s head didn’t look the correct shape, but she was assured time and time again at each visit that his head would ‘sort itself out. She was told about repositioning techniques that could help, but failed to do so.

Donna continued: “When Riley was 5 months old, he was seen by a physiotherapist about his plagio condition. It was at this appointment that we were told that Riley’s plagio condition should have been dealt with when he was six weeks old. I’m devastated that it has taken this long to find answers about plagiocephaly and being made to feel that I’m a paranoid mother who is over-reacting.”

Deformational plagiocephaly (flattening of one side of the head) or deformational brachycephaly (flattening across the back of the head) can be caused by a number of factors, including the sleeping position of the infant, torticollis (a tightening of the neck muscles which Riley suffered from), and problems during natural delivery.

Repositioning needs to be started as soon as a flattening is noticed, usually at about 8 weeks. If repositioning techniques do not work the plagiocephaly needs to be treated before the skull of a baby is fully formed so it can be gently allowed to grow into a correct shape during early infancy. This is achieved by the child wearing a STARband™ - a special helmet that is specifically made to suit the baby’s own head shape. This treatment costs £1950 at Össur’s Technology in Motion centres.

Donna has decided that her son’s only option is to pay for the private treatment offered at Cardiff’s Technology in Motion centre as this is not provided for by the NHS. So to cover costs she is organising a range of fundraising events.

Donna and partner Simon have organised a charity auction to be held in the Wyre Arms in Barnstaple on Friday 29th February. Companies from Barnstaple and Bideford which include Argos, Maplins, restaurateurs Hancourt and Comador have all donated prizes for the event.

Rachel Whitmore, an Orthotist and Cranial Remoulding Specialist at the Technology in Motion centre in Cardiff, said: "In extreme cases we have found that untreated patients do not improve as predicted by their doctors and if caught early, we can correct an infant’s head shape to nearly normal.”

"There is only a very short window for treatment with the ages of four to seven months being the ideal, but we can start treatment up to the age of 14 months and still gain correction with a view to finishing by about 18 months but at this age the process becomes a lot less effective and will take longer. Basically, the earlier treatment starts the better the result and the shorter the treatment time.”

"The NHS needs to be acting on this condition a lot earlier and offering better advice about repositioning babies, recommending ‘tummy time’ when the baby is awake and Mum is with them and if there is a torticollis this must be managed early and actively. Just waiting and seeing will not work."