By Graeme Strachan

A DUNDEE mum is looking forward to 2008 with renewed optimism knowing her daughter will not go through life with a horrendous skull deformity and the support group she initiated has given many parents valuable support and guidance.

Last year was a dream come true when Mandy Muir’s daughter Annabel had her plagiocephaly (flat head syndrome) successfully treated and MSPs agreed to carry out a study into the condition.

“It’s such a relief to know Annabel can now lead a normal life without the worry of all the problems unresolved plagiocephaly can bring—the most worrying being she would have had to go through life with a horrendous deformity which can be so easily prevented,” said Mandy.

“It’s lovely to see her little head looking so perfect in the bath each day knowing she will be able to wear riding hats, glasses if need be and won’t be bullied throughout school for having a deformity.

“Annabel finished treatment last December and is coming on leaps and bounds. She is reaching every milestone and is a healthy, happy two-year-old.”

Annabel was diagnosed with flat head syndrome at five months and Mandy saved up for three months to fund helmet therapy treatment privately in Leeds.

Helmet therapy, which reshapes the head as the skull bones grow, costs £1850 plus around £2000 travel expenses to pay for trips for consultations, meaning that many seek fund-raising help.

Annabel’s starting measurements were 96% and 16mm misaligned, meaning her head was as wide as it was long, but it’s now within the normal range after finishing helmet therapy.

“Annabel’s diagnosis early in 2006 has been life-changing, not only for Annabel but for hundreds of babies throughout Scotland and further afield,” said Mandy.

“The support group, set up during the first few weeks of Annabel’s treatment, has almost 500 members with more concerned parents joining every day. I have been in contact with parents from England, Spain, America, India and Holland.

“Plagiocephaly can potentially affect all babies under the age of one to some degree regardless of where they live.

“Many parents contact me asking if there are support groups in their areas, which thankfully there are, and I can forward details on to them while keeping in close contact with them to ensure they have the best support available. Sadly in many areas support groups are the only available source of support for parents.”

The group submitted a 15,000-signature petition that has led to information leaflets being produced to be given to all new parents and the pledge of a study being undertaken by the Scottish Government.

“We were so scared they were going to say we’ve produced a leaflet and that’s all, but to hear them say plagiocephaly is such an important issue that it has to be researched was unbelievable,” she said. “I’ll keep campaigning until mandatory checks are introduced at birth and six weeks.

“Running the support group keeps me very busy, as does my job as a staff nurse and raising two children but receiving Emails from parents thanking me for supporting them throughout their babies’ treatment and finding out their head shapes are perfect means the world to me.

“I can remember the day Annabel was diagnosed and the feeling of helplessness when I realised the cost of treatment but, due to family and friends kindly helping with funds and fund-raising, we managed to raise the funds in three months.

“Many families in rural areas don’t have these resources available and … if treatment isn’t sought when a baby is within a certain age, usually around 24 months, the treatment would be ineffective.”

Mandy wants better advice on plagiocephaly and for £2000 helmets to be available on the NHS. But she’s enormously pleased with what she’s achieved so far.

“I’m extremely happy with Annabel’s progress and am looking forward to this new year when I, with the members of the support group, can hopefully continue to make a difference to their babies’ future happiness and give parents all the support and guidance they need,” she said.

Plagiocephaly can result from either external forces applied to the soft infant skull, placing babies on their backs in the same sleeping position all the time, or torticollis, a tightening of neck muscles.

Wearing a padded helmet can remedy the condition but, according to the NHS, it is a cosmetic issue and does not warrant treatment. Some doctors remain unconvinced about the effectiveness of helmets.