From the setbacks to the celebrations, Nicola, mother of adorable baby Jenson, describes her little man’s plagiocephaly journey:
Jenson has always been a good sleeper, too good in fact. However, what we didn’t know was that his sleep was affecting his head shape!
At 8 weeks, my mum was changing Jenson and in a shocked voice said “Oh Nicola have you seen this? His head looks funny!” On closer inspection I was mortified that, firstly, I hadn’t noticed and, secondly, his head was very flat on the right side! “What do I do?!” I thought. I turned to Google and soon came across the condition plagiochephaly.
I immediately booked an appointment with my GP to check his head and to see what we could do to help him. My GP didn’t seem at all bothered and I was told it would round out on its own. “That is fair enough”, I thought, “but his head is really flat now! Is this going to correct itself?”
So to Google again I went. After a few minutes searching, I stumbled upon Technology in Motion (oh the relief!). I was happy to find that something could be done, despite having to wait until Jenson was 4 months old to be assessed.
I continued trying to reposition Jenson and bought a special pillow to help him. However, nothing changed. So, back to the doctors I went. This time, I was referred to the paediatrician. The doctor checked Jenson’s head and told me that as soon as he started to move about, his head would round out on its own. Again, I left the doctor’s fraught with worry!
So, I finally gathered up the courage to accept that there was an issue and contacted Technology in Motion. I spoke to Doug who was very reassuring and told me to contact them again when Jenson was around the 4 month mark. When Jenson was 4 months old, I called back and spoke to Lisa who, again, was brilliant and very reassuring! I booked the appointment for our first consultation there and then.
After our initial assessment, we were told that Jenson had severe plagiocephaly and, although we could continue repositioning, his head may stay flat! After a look at the helmets and a good natter with Sandie (one of Technology in Motion’s orthotists), we decided to give Jenson another month before going ahead to see if his head shape may improve on its own. When we went back, it had, but only by 1mm and his brachycephaly had worsened! We immediately booked the treatment and the TiMband was fitted exactly 2 weeks later.
I was a wreck on the day of the fitting. “Will it hurt him?”, I thought, “Is he going to be OK? Are we doing the right thing?”. Despite some tears and sleepless nights, Jenson took to the helmet really well and after 1 week he had improved by 5mm!!! We were elated!
The support we received throughout treatment was the best. Sandie gave me her mobile number and I was invited to join the support group on Facebook which was a real life saver (hearing about all of the other families going through the same thing gave me so much reassurance!). We had regular check-ups and Jenson’s head shape improved each time! Towards the end, the improvements did slow down slightly, but that didn’t bother us, it was still working!
Jenson wore his TiMband for 5 months and, yesterday, he graduated! His measurements at the start of treatment were 18mm and 96% and now he is 1mm and 86%! We cannot believe how much he has improved!
We are forever in debt to Technology in Motion. They were the ears that listened when the NHS turned us away saying Jenson’s plagiocephaly was just cosmetic!!!! Each time we went for a check-up, it was like visiting family, Sandie was great and always so positive and reassuring. Jenson was always smiling in his helmet and people always said how cute he looked in it! We are just amazed!!!!! Thank you Technology in Motion!
Steph, mother to TiMband graduate Ardle (one year helmet-free, hooray!), shares her little man’s story:
We initially noticed there was something wrong with Ardle’s neck when he was 4 weeks old. However, he wasn’t officially diagnosed with flat head syndrome until he was seen at the Royal Hospital for Sick Children in Glasgow when he was just under 4 months old. At approximately 8 weeks old, when it became clear he had a wonky head shape, I sought information online and we received treatment from a chiropractor, osteopath and NHS physiotherapy. We tried repositioning techniques and undertook exercises for his neck.
As previous attempts appeared ineffectual, I trawled the internet every evening when the boys were asleep looking for solutions to help resolve Ardle’s head shape. I came across the Technology in Motion website and new instantly it was for us. We took the view that it was better to try something than do nothing. The last thing we wanted was grown-up Ardle to accuse us of doing nothing to fix his head shape. I didn’t want to live with regret.
At his assessment, Ardle was diagnosed with plagiocephaly and severe brachycephaly. His journey was a very smooth one, with slow and steady progress and next to no problems throughout. Ardle took to the helmet instantly and pretty much sailed through the whole experience, only suffering with the odd slight redness which resolved with a little cream.
We were very lucky not to come across any negativity. If people stared at Ardle (which they did), we quickly told them why he wore a helmet and they soon understood, astonished that this form of treatment is not funded by the NHS. Everyone supported us.
We are absolutely delighted with the results! Baby Ardle ended up in the green portion of the plagiocephaly severity chart and we couldn’t be happier.
Today, Ardle is doing brilliantly. He is the cheekiest, most adorable, wee lad and is loved by all that know him. He was diagnosed with scoliosis last year but he does not let that hold him back from doing anything. He turned 2 last week and, unlike at the 8/9/10 month mark when our paediatric consultant was slightly concerned about his development (he couldn’t crawl, sit up etc. at the normal age), there is now no doubt that he has caught up – he can count from 1 to 10 quicker than his (almost) 4 year old big brother!
How does plagiocephaly affect the head and face?
Plagiocephaly is predominantly identified by a flattening either at the back or to either side of the skull. As a direct result of this flattening, facial features can become misaligned and other issues may develop. The facial features subject to the most change include the eyes and the ears. As such, facial asymmetry is also regarded as a good indication of plagiocephaly.
Do cranial helmets influence ear position in babies with plagiocephaly?
In 2012, a paper was published in the Journal of Craniofacial Surgery exploring whether or not helmet therapy, such as TiMband treatment, influences the ear position in babies with positional plagiocephaly.
This is a question that we are often asked but it’s a difficult one to answer, as the changes can be so subtle.
What is Deformational Plagiocephaly?
Deformational plagiocephaly, also referred to as positional plagiocephaly and flat head syndrome, is a condition upon which an infant’s skull appears flattened either at the back or to either side. This flattening is predominantly caused by continued external pressure to the skull when the infant lies with the head in the same position for prolonged lengths of time. However, other causes include: multiple, premature and assisted birth.
There are two types of deformational plagiocephaly, posterior deformational plagiocephaly (PDP) and frontal deformational plagiocephaly (FDP). As their names suggest, posterior deformational plagiocephaly refers to a flattening at the back of the head while frontal deformational plagiocephaly is characterised as a flattening which is most noticeable at the front of the head.
Most new born babies have misshapen heads at birth and in the majority of cases this will self-correct in the first few weeks of their life. However, there are a number of reasons why a baby may continue to have a misshapen head or for a misshapen head to develop. It is important to recognise what is considered a normal head shape and the options available for babies who develop a flattening in early infancy.
This blog posts explores the causes of a misshapen head and how long it takes for a baby’s head shape to fully develop to ensure you have all the information you need when finding the right treatment for your baby.
Study to investigate the behavioural, cognitive and neurological impairments associated with craniosynostosis and plagiocephaly
In 2012, we received a piece of news regarding USA research on craniosynostosis and plagiocephaly. This article highlighted the Department of Pediatric Psychiatry at Seattle Children’s Hospital’s participation in an NIH-funded study of the neurobehavioral correlates of craniosynostosis. This craniofacial disorder is characterized by the premature fusion of two adjoining plates of the skull, which result in malformations and dysmorphology of the head in the absence of corrective surgery.
Torticollis, sometimes referred to as wryneck, comes from the Latin words tortus (twisted) and collum (neck). Infants who have the condition have their head turned and tilted to one side and they struggle to move their head to the opposite side. This blog post explores torticollis in more detail, the different severities of the condition and how to find effective treatment for your baby.
Scaphocephaly is the word used to describe a narrow head shape and can be associated with flat head syndrome. The umbrella term for a long thin head shape is referred to as dolicehocephaly, scaphocephaly is caused by the early fusion of the sagittal suture which runs from front to back at the top of the skull. Early fusion of a suture in infancy is called a synostosis and this type is the most common form of craniosynotosis.
Positional plagiocephaly is often called deformational plagiocephaly, and this shows as a flattening on one side of the back head. It’s caused by external pressures to the skull during infancy and can develop either before or after the baby is born. Parents tend to notice a flattened area before the age of 3 months and it can be caused by the infant staying in one position for too long when the skull is particularly soft and flexible.
Mini Directory of Plagiocephaly Advice and Support Websites
Having a baby with flat head syndrome can feel rather overwhelming at times. While the condition is not proven to have a negative effect on development, it can still be distressing for parents who, naturally, want what is best for their little ones. But you are not alone. In the UK, plagiocephaly affects around half of all babies under the age of one to some degree.
No matter what stage of the plagiocephaly journey you and your family are at, there are several fantastic resources out there which you can turn to for plagiocephaly advice and support. Whether you wish to share your experiences with other parents or seek advice on plagiocephaly from the experts, this mini directory will help you find the right places to go in times of need.