Interview: Brave battle for the baby who must wear a helmet

LITTLE Loki Sargent plays happily wearing his special camouflage helmet. But for Loki, the helmet is not part of the game. The five-month-old has to wear the helmet for 23 hours a day, only taking it off for bathtime and to give him a break.

Loki suffers from deformational plagiocephaly, or "flat head syndrome" as it is commonly known. Cases of the condition, which causes a baby's skull to have an abnormal shape, have increased dramatically over the last two decades and some experts believe cot death advice could be one cause.

"The Back to Sleep Campaign of the 1990s, where mothers were encouraged to put their babies on their backs to sleep, saw a huge reduction in the number of cot deaths. But there was an inadvertent side-effect," says orthotist Kate Chauhan, of the RSL Steeper clinic, in Leeds.

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"Because of the campaign, and also the rise of travel systems where babies were spending more time in hard car seats and baby bouncers, the soft skull became flattened.

"The Back to Sleep Campaign was fantastic and saw a 40 per cent reduction in cot death, but now we are seeing increasing cases of plagiocephaly, and a lot of that is down to lack of awareness about the need to increase tummy time for babies."

Some predict it could affect half of all babies, although there are no figures so any estimate is guesswork

RSL Steeper started to offer special Starband helmets (cranial remoulding orthoses) for babies suffering from plagiocephaly, last November, and is already seeing two new babies a week with the condition. Kate and other orthotic specialists believe that if used at the right stage of a baby's development, the helmets can make a difference to the shape of the baby's head.

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But the NHS does not fund the 2,000 treatment and doctors maintain that most children's heads will right themselves naturally and regard it is purely a cosmetic treatment with parents increasingly looking for perfection in their children.

The Department of Health maintains that there is no evidence that plagiocephaly affects a child's development.

"Positional plagiocephaly is quite a common condition and it does not cause any health problems," said a spokesman.

"Although an infant's head may become flattened during the first few months of life, the shape of their head will usually correct itself by their first birthday."

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But Kate disagrees. "Cases of deformational plagiocephaly are becoming more common in the UK, and, at the moment, the NHS does not fund treatment for the condition as it is seen as a purely cosmetic issue, despite evidence that in some cases there is an increased risk of developing associated problems later on in life.

"These children are only just hitting 16 and so there have never been any real studies to see whether their development is affected. We just don't know. What we do know is that, in severe cases, their hearing and eyesight can be affected because of the deformed shape of their skull. It is essential that we see these children early. By 18 months, it is normally too late as the skull is hardened into shape."

If there is no natural improvement in the shape of their baby's head within the first few months, Kate recommends that parents should get their children checked out by a qualified orhotist, although she will not treat any child under four months of age. She says it can be successful up to the age of 18 months.

"We want to give nature as long as possible, but after four months if there isn't any sign of improvement, then I would suggest they come to see us."

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Loki Sargent's mother, Aileen Castle, found out about the RSL Steeper clinic after searching the internet, after she was told by her GP that Loki's skull deformity would right itself.

"I spotted quite soon after his birth that he had flat patch at the back of his skull," says Aileen, who travels from Nottingham to Leeds every two weeks for Loki's check-ups.

"I did some research and found out about 'tummy time' and also positional techniques which show you how to move your baby's head even if they are lying on their backs. But it didn't seem to make any difference, so I started to look for places who would take the condition seriously."

She discovered RSL Steeper and just before Christmas Loki underwent a free consultation where Kate had a good feel of his skull to rule out a more serious condition when the sections of the skull fuse together too quickly and could need surgery.

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Loki then had a special scan, which takes 90 seconds and involves the baby lying in a special "Starscanner". It scans the baby's skull and creates a 3D computer image which can be measured by the orthotist for any abnormalities. This was then sent to America for the Starband helmet to be bespokely made for Loki, whose condition was at the severe end of moderate.

"I was surprised when we got the diagnosis but a bit relieved," said Aileen. "In my head, I think I knew it was worse than anyone was saying. The scan showed he was just 1mm away from having a severe case of the condition. His ears were already out of alignment and the front of his head was not as aligned as it should be.

"His head was a very weird shape. It was clearly visible, it was flat on one side and on the other there's a bulge."

After Loki was fitted with his helmet, his father, Nathan, chose a camouflage design from the patterns available, Loki has to travel back to Leeds every two weeks for a review and for the helmet to be expertly altered by Kate to fit the changing shape of his growing head.

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I caught up with Aileen and Loki at his second review and he had been wearing the helmet for a month.

A second scan revealed marked improvements in the shape of his skull and the helmet didn't seem to bother him at all. He will probably have to keep it on for the next six months.

Aileen was pleased with the results and believes the 2,000 is worth every penny,

She has now launched a Facebook campaign to raise awareness of the condition and how to avoid it and also a petition calling on the Government and NHS to raise the profile of plagiocephaly and to get treatment on the NHS.

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"This is not cosmetic, treatment it is essential treatment and should be available to all babies on the NHS," says Aileen, whose case has already been taken up by her MP, Vernon Coaker.

"Even if there is a slight risk that it could cause problems in later life, surely it is small price to pay and could actually save the NHS money in the long run. I was never told about the need for tummy time at my antenatal classes or by my midwife or health visitor. It seems madness that new mums are not made aware of the risks."

Kate is backing her call. "In Scotland, leaflets on tummy time are given out by GPs to pregnant women. I would love to see more awareness raised which would take away the need for helmets," says Kate who gives talks to Children's Centres about tummy time.

"We also need to raise awareness among health visitors and GPs. We hope that as more research is completed, the NHS will reconsider their position on cranial remoulding orthoses."

PLAGIOCEPHALY FACT FILE

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Plagiocephaly is a condition affecting a baby's skull, causing it to take on an abnormal shape.

It can be characterised by the flattening of the back or one side of the head.

It can be noticeable from birth or it can appear in the first few weeks or months of a baby's life.

If by four months old the head shape has not improved, visit your doctor.

www.facebook.com/pages/Plagiocephaly-flat-head-syndrome-Awareness

www.ipetitions.com/petition/plagiocephaly_treatment/

www.steeperclinic.com

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