Parents need more advice to deal with disfiguring condition

Published on Tuesday 24 June 2008 10:23

PLAGIOCEPHALY – or Flat Head Syndrome – is caused by prolonged pressure on one part of a baby's skull.

50 per cent of babies under the age of one suffer from this condition. Untreated, plagiocephaly can cause misalignment of ears making it difficult to get glasses, and extreme cases can cause speech and dental problems.

I submitted a petition on plagiocephaly to parliament in May 2006 with more than 15,000 signatures asking that information and prevention advice be given to all parents, that babies be checked at birth and after six weeks for the condition, that research be carried out and that corrective helmets be available on the NHS.

We could dramatically reduce the number of babies suffering from plagiocephaly if all babies were checked for signs of the condition and, if present, repositioning advice given. Since our petition was submitted, the Scottish Executive has produced a leaflet, but new parents are not aware of this.

The petition goes before the Public Petition Committee today and I am hoping that the parliament will at least adopt the recommendation on checks.

At present, it is mandatory that babies have certain checks carried out prior to leaving hospital and again at six weeks. It would cost very little to ensure that plagiocephaly is included in these checks. This could potentially avoid thousands of families going through the heartache we endured.

Few babies are born with plagiocephaly, the majority develop it in the first few weeks of life. These cases could be avoided if it were identified and the correct advice was given to parents. The advice given at present is that the flat spot will grow out. This is not true in all cases. I have seen children aged ten and over who still have a flat head and endure bullying.

The NHS will pay for removal of tattoos, to have ears pinned back and dental braces but will not pay to correct the shape of a baby's head.

My son Robbie suffered from plagiocephaly and we fundraised to get the 2000 for his treatment. Helmets work by holding in place the unaffected area whilst leaving room for the flattened part of the skull to grow out, helping the skull to grow rounder. He is now three years old and you would never know he had a "flat head". I have no regrets in going ahead with the treatment but feel extremely angry and frustrated that this could have been avoided. I did question Robbie's head shape when he was nine weeks old but was not told about plagiocephaly, let alone given any advice on repositioning. Had we been given advice then we could have avoided helmet treatment altogether.

I just want to ensure that in the future no families have to go through the stress, upset and financial burden we endured when Robbie was a baby.

Claire McCready is a founder member of Plagiocephaly Care UK. Further support is available at www.plagiocephalycare.org