The radical new treatment for 'flat head syndrome'

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Indy Lifestyle Online

I learnt later that this sort of reaction to plagiocephaly - the name of my daughter's condition - is typical. A survey carried out by Plagio UK, an online support group, has shown that eight out of 10 of its 500 members first learnt about plagiocephaly from somewhere other than a medical source.

I didn't feel happy after returning home from seeing my doctor, and had a look on the internet. I discovered that positional plagiocephaly or flat head syndrome is a cosmetic condition which occurs when a baby's soft skull is subjected to prolonged pressure, causing the head to become misshapen. It does not affect brain development or function.

Aside from the repositioning techniques my GP had mentioned, treatment for the condition took the form of something called helmet therapy: the baby must wear a specially designed helmet for several months. The only specialist I could find who was treating patients in the UK at the time (mid 2004) was a German maxillofacial and craniofacial surgeon called Dr Chris Blecher. I didn't contact him, not only because I hated the idea of a helmet but also because I was suspicious of why the treatment wasn't available in the UK.

Instead I tried moving Tabitha's head round in the middle of the night. But as the weeks wore on, it seemed to be getting worse. So I made a private appointment with Dr David Dunaway, a plastic surgeon. He confirmed that she had positional plagiocephaly and said that although she would always have a slightly misshapen head, it would become less obvious as her head grew. He said that he had recommended some parents to Dr Blecher and they seemed happy with the results but there weren't official studies. "If Tabitha were your daughter, what would you do?" I asked. "I wouldn't do anything," he said.

But I still had doubts. I e-mailed Dr Blecher some photos of Tabitha. He e-mailed me back immediately, saying there was "significant deformity". I still didn't act. If helmet therapy were so fantastic, why couldn't I access it through conventional channels? I was finally goaded into action by a chance meeting with one of his patients, the son of one of my sister's friends. The little boy was nearing the end of 16 weeks of helmet therapy and his head looked almost perfect. I took Tabitha to see Dr Blecher a few days later and after measuring her head with callipers he told me that she had severe plagiocephaly, with asymmetry of 2.4cm. This measurement is the difference between the short and the long diagonal: below 1cm is normal; 1 to 2cm is moderate and 2cm is severe.

The principle behind the helmet is simple. A plaster cast of the head is taken to get a perfect fit, and the stiff foam lining inside the moulded plastic helmet is then filed away to allow for growth in the flattened areas. In this way, as the head grows, it fills out the gaps. Tabitha wore her helmet for 23 hours a day. When she was measured after eight weeks, the asymmetry was reduced to 1.2cm. After 18 weeks, it was down to just 3mm and the helmet was removed for good.

With such astonishing results, it is unsurprising that helmet therapy is taking off. Philip Saich, who runs the charitable organisation Headstart4Babies to raise awareness of plagiocephaly, has advised 700 families over the past year. There are now three helmet therapy providers in the UK. But most treatment is still paid for privately - the view in the medical profession remains that helmet therapy is unnecessary.

There are also concerns that parents will start putting babies to sleep on their stomachs to try to avoid plagiocephaly. Since 1991 cot deaths have fallen by 75 per cent and the Foundation for the Study of Infant Deaths is anxious that this trend should not be reversed.

Dr Blecher realises that more evidence is needed before helmet therapy is embraced by the medical establishment. But as a mother who agonised over whether to go ahead with helmet therapy, I have no regrets whatsoever that I did.

PlagioUK: http://groups.msn. com/plagiouk; www.headstart4babies.co.uk

What is plagiocephaly?

Plagiocephaly is the umbrella term for three types of positional head deformity.

* Plagiocephaly The side that is flattened will often be accompanied by a prominent forehead, which when viewed from above looks like a parallelogram shape instead of a normal symmetric oval shape.

There is also sometimes asymmetry of the face.

* Brachycephaly The entire back of the head is flat and the head has the appearance of being wide and short (from front to back). Brachycephaly is most often seen when a child sleeps entirely on the back of his head.

* Dolichocephaly Characterised by a long and narrow head shape, it can result from extended time lying on the side of the head. It can also be caused during pregnancy if the head becomes wedged under the mother's ribs.

Plagiocephaly is considered a cosmetic disorder because it does not restrict brain growth or cause brain damage. But it is thought that it can also cause problems with the eyes, ears and jaw, and migraines.

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