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Plagiocephaly - the truth, a mother's perspective.

I had an assisted delivery with my first son Oliver, with the use of forceps. On the first attempt the doctor pulled when I did not have a contraction. When Oliver was born he always looked up to the right side. In a haze of first time motherhood, overwhelming love and joy, worry and complete exhaustion followed by complications from my delivery, it wasn't something I noticed until my little boys head started becoming very misshapen at only two weeks old.


Newborn Oliver, with a perfect head shape.

Oliver adored his sleep. As an energetic two year old I am still lucky enough to have a little boy who sleeps for two hours in the afternoon, and at least twelve hours through the night. I am sincerely hoping this remains when baby No.2 arrives in the next eight weeks. As a result of his love of sleep, and the 'back to sleep' campaign for all newborns to prevent SIDS, Oliver developed a flat spot to the right side of his head and along the back of his skull. I mentioned this to my health visitor who talked about repositioning techniques and advised it would get better with age. My gut feeling was that this was not the case. At six weeks old when Oliver's head shape began to alter his facial symmetry, I knew that something had to be done.

We saw a pediatrician at the Manchester children's hospital, and Oliver was referred to physiotherapy sessions at our local clinic in Leigh, Manchester. Through investigations with specialists I found out my little boy had torn neck muscles as a result of his traumatic birth (torticollis). With a lot of excercises each day, Oliver began to use his neck normally on both sides, and the effect on his head shape certainly slowed down, along with him becoming more active as he developed with age. 

I researched 'flat head syndrome' further online, and found information on plagiocephaly (http://www.babycentre.co.uk/a1042681/plagiocephaly) and brachycephaly (http://www.brachycephaly.info/). I also found information on helmet treatment for babies, but this specialist treatment was only available in two areas of England which are funded by the NHS. It was a postcode lottery. I felt a bit deflated until I discovered that you could get private treatment for the helmets but this came at a cost. I felt that this was something that I had to do, and I got in contact with one of the clinics Technology In Motion that I had read good reviews on, and sent photographs along to Steven Mottram the UK's leading clinician in the field of flat head syndrome correction who provides cranial reshaping helmets called TiMbands (http://www.technologyinmotion.com/plagiocephaly). I booked an appointment with Steve to assess Oliver's severity. The only massive pitfall for me was that the treatment cost £2,000. I was on maternity leave, and this was simply something I did not have especially with the expense of a newborn.

I took Oliver along to his first appointment at three months old (treatment could start from four months), where I found he had a very severe plagiocephaly (one of the worst) and that Steve was sure that certainly the treatment would work but Oliver's head shape would probably never be perfect. A 'normal' head shape would have no asymmetry (obviously most people have a degree, perhaps 1 mm or so which you would not notice) and a length and width ratio of around 82%. Oliver measured 16mm asymmetry and a ratio of 108%. I was told Oliver's head would never be normal without the treatment. That very day while waiting for our appointment at the Manchester Technology in Motion clinic I had seen a seven year old boy with plagiocephaly. His parents were in with his younger baby brother and told me they had listened to the health visitors and pediatricians who told them their sons head shape would get better, and it didn't, and that they will regret it for the rest of their lives. That was my decision made for me, I needed to find the funds to get Oliver the treatment.






I did a little research and came across two charities who provided financial aid to enable parents on low incomes to receive money towards the helmet therapy, one was the Tree of Hope and the other was HeadStart4Babies. I wrote to both. Philip Saich from Headstart4babies advised if I could raise money through a JustGiving page for the charity and fill in a financial information form that they should be able to help with Olivers treatment provided I was within the threshold (which I was). I started a campaign through JustGiving - I had some wonderful support, a friend who held a gym class with donations and payment for the session going to Oliver's treatment (around £400) and a charity raffle event which was held in aid of Oliver (around £600). I was incredibly grateful. I managed to raise around with this support £1,300, and the rest was given by Headstart4babies to start Oliver with his treatment.

Oliver began is treatment at the optimal age of 4 months, at his next appointment he was fitted with a 'material glove' which was placed onto his head which had little points marked for a special machine to pick up the shape of his head, he was rotated and an image scanned onto the computer of his head shape. This was to be used to make the mould for the helmet. Steve always commented on what a happy baby Oliver was, and that he did not see Oliver having an issue with the helmet. 

Two weeks later we returned to have his helmet fitted. True to form, Oliver took it in his stride. The first few days you have to ease them into helmet wear, an hour on, an hour off etc. Then after about a week its on for 23 hours out of 24 hours, including sleeping in the helmet. The helmet can smell due to sweat, and needs to be cleaned regularly. A detailed manual is given and the specialists are always available via email and phone to discuss any issues that may arise. My little boy never had any issues. On his first appointment one week later, his measurements had went down to 104% ratio and 10mm asymmetry, and that was without even wearing it for the full 23 hours at that stage (he was still in his introduction period).

Oliver did eventually grow out of one helmet and needed another, and the wonderful charity Headstart4babies were able to fund most of the £2000 for his second helmet. Without this charity Oliver could not have had the treatment. My little boy will never have a totally 'perfect' headshape, but you would never notice. His assymtery sits at 1mm, and his ratio is around 90%, but his head looks perfect. You would never be able to tell.







The treatment provided by Technology In Motion is second to none - I would highly recommend them. As stated previously they are always on call to help, you are kept fully informed and at the end of the treatment you are given a memory stick containing the images and information of your child's results. (The images above will give you an idea of the severity of Oliver's plagiocephaly).

To anyone who is being told head shape will get better through tummy time, and through age when the baby begins to sit up, if it really is terribly severe it will not get better without treatment. I find very disappointing that two areas of the NHS in England will fund this treatment, but the rest of the NHS will try and push that it has not been proven that it works and they do not support it. It is equally disappointing that people can get money for other what I deem 'cosmetic' surgeries, but that something that can effect a persons every day life (inability to wear motorbike or bicycle helmets, stigma and bullying for being 'different' along with pressure on the brain, eye problems, nasal tract alignment issues and other factors) is not accepted because it is also classed as a cosmetic surgery. I am hoping eventually this will change. 

If anyone is facing this issue with their child do your research so you are fully informed, and contact Technology in Motion for an appointment to at least discuss your options further. It is the best decision I made for my son. I am hoping that with my knowledge now I can prevent my newborn from needing to wear a helmet, and that my next birth can be hopefully as normal as possible with minimal intervention. I now live in Northern Ireland and unfortunately the treatment is not available here.


NB: One concern raised through various articles is that helmets would cause some form of developmental delay. There is a paper I will try to find which discusses developmental delay in children who have untreated plagiocephaly. Oliver is 29 months old and in the past 4 weeks I have been told twice that he has an incredible memory, is fantastic at flash cards, knows words and colours that a two year old would not be expected to know. He's also fantastic at matching snap cards. The helmet has had no effect on Olivers mental development.


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