This is Coby’s story, as told by his grandmother, Carol.
My name is Carol, I live in Bridlington, East Yorkshire. The day my grandson was born, was one of the happiest and proudest moments of my life – he was absolutely totally perfect – weighed in at 6lb 7ozs – a tiny miracle. My husband Tony and I were so very proud of my daughter Andria and her lovely husband John – they called their baby Coby. Every parent’s wish is for their baby to be perfect in every way.
When Coby was approximately ten weeks old we noticed a slight flattening to the left side of his head, more at the back. But at the time we took the Health Visitor’s advice that it was a temporary condition that Coby would grow out of as he got older and began to sit up and roll over. Failing that, she said “his hair would cover it”.
A few weeks passed by and the flattening seemed to me to be getting worse – I aired my views to Andria and John who had both been told by their Health Visitor to employ the “repositioning technique” and “tummy time”. Andria and John religiously adhered to this new routine – unfortunately over the following few weeks Coby’s head was not improving. I could see that they were both convinced that the condition would improve over time, because the HV had said so, but also upset as there was no visible improvement. By now Coby was 4 months old.
I took it upon myself to research “flat head syndrome” (or Plagiocephaly as we now know it) on the Internet and was amazed at what information I discovered. Every article I read said there was no treatment available on the NHS for correcting this condition because it was viewed as being “cosmetic”. I read that, over time without corrective treatment, the condition would also affect the jaw and ear alignment, which would mean Coby would be unable to wear any type of headwear later in his life, such as a crash helmet if he were to have a motorbike or any type of helmet within the Armed Forces, as well as sunglasses/spectacles.
I was completely gutted. Not to mention the torment he would endure at Pre-School and School whilst growing up – nothing worse than being picked on or bullied at school. Already we were experiencing people staring at his misshapen head.
I spent almost six hours reading absolutely everything I could find about Plagiocephaly, until the ungodly early hours of the morning. Eventually, I found details about a company called “Technology In Motion”. I printed off several pages of information for Andria and John to read through at their leisure and the following day I made a phone call to the clinic in Leeds to gather further information. I was told that there would be an initial no obligation, free consultation – fantastic news – now all I had to do was convince Andria and John to go along to the clinic.
Easy you might think?? Not at all. I didn’t want to be too insistent about going for the consultation – it had to be their own decision. They seemed confident that the HV was giving out correct information. We all wanted to do the “right thing” for Coby – we discussed it with friends and family, some thought it to be cruel, others thought it might make matters worse. My own way of looking at it was that the treatment was non-invasive, drug-free, painless and more importantly Coby would not have to spend any time in hospital away from his parents as no surgery was involved. Rather this than have cranial surgery later in life.
Thankfully, two weeks later Andria and John agreed to just “go and see what they say at the clinic”. I was so relieved. I had their permission to phone the clinic the following day and I made an appointment the following week. Unfortunately John was unable to attend the appointment due to work commitments, so I booked a day off work and took Andria and Coby for the initial assessment at the Leeds clinic. Of all dates, it was Friday the 13th of April! Coby was now 5½ months old and there was still no improvement to his head shape, nor had he begun to roll over or sit up.
On the way to the clinic, it was apparent to me that Andria thought we would be having a wasted journey as she kept apologising for me having to take a day off work. I reassured her that I really didn’t mind and at least we would have an expert opinion by the end of the consultation. We were both apprehensive as we entered the clinic but were warmly greeted by staff and only had to wait a short while for our appointment with Sandie Waddell, Director of Clinical Services.
Andria and I had many questions and concerns, which we discussed at length with Sandie, she then examined Coby and took the scan image. We waited for the result. Our hearts sank when Sandie stated that Coby not only had Plagiocephaly, but also a condition called Brachycephaly which we had never heard of before. On the Severity Chart he fell into the “very severe” category.
We were absolutely, totally devastated – his condition was even more severe than I had thought. Understandably Andria was visibly very distraught – naturally I comforted her as much as possible. I had not expected such a severe result. We were speechless for a while until reality sank in and we needed to make a decision. For me there was only ONE choice, but not mine alone to make.
I knew Andria and John would be very worried about the cost of the treatment (£1,950). We discussed the way forward and I suggested organising fundraising events to obtain the money – I had lots of ideas – Sandie also mentioned a charity that we could approach for help at www.Headstart4Babies.co.uk – and we could also set up a Just Giving webpage on the internet. I explained to Andria that the sooner Coby started the treatment, the less time would be required for him to have to wear the helmet.
It took a little while, but I was so relieved when Andria eventually agreed to go ahead with the treatment even though she was still very upset about the result. We started immediately and ordered the TIMBand correction helmet. Andria chose the pale blue stripe design and two weeks later, we were back at the clinic for it to be fitted. He looked sooo cute – like a little “Super-Hero”. Coby adapted to his helmet quite easily within a few days and started on his “mending journey”.
Admittedly, some people did stare and a few asked what was wrong with him – but some children even asked where they could get one from! Our first follow up appointment one week later showed an amazing 4mm improvement. We were all over-the-moon at such a quick result and now very optimistic about the future improvements. We also met several other families at subsequent appointments, which boosted our confidence as we were able to compare baby stories and listen to how marvellous the results had been for everyone.
One month after the initial fitting, there was a massive visible improvement (see attached photos). In all, Coby had to wear the helmet for 166 days – he was 11 months old when the treatment was complete.
Looking at the attached Progress Chart, he started well into the very severe RED ZONE, we aimed for the “Target” in the ORANGE ZONE , but exceeded all expectations and finished almost on the edge of the GREEN ZONE. We are ecstatic. We have just celebrated his 1st birthday and it seems as though the helmet had never even been a part of his life at all. The fantastic final result is absolutely AMAZING – noone would ever know there had ever been such a severe skull deformity. I am delighted to have found Technology in Motion – we cannot thank Sandie enough for her kindness and support throughout the whole experience. I would have no hesitation whatsoever in recommending Technology in Motion to anyone in a similar position to us, 100% top marks to TIMBand.
All of our fundraising events were a massive success and we raised in excess of £2,000 with the help of lots of friends and family during the following two months. Thank you to everyone involved – you know who you are. Coby became a little celebrity in his own right as our local press office followed his story. Andria and John were initially very conscious of people remarking on “that poor baby” – but we soon became “immune” to such comments and have never regretted one single moment of the treatment – it was worth every bit of hard work to have our perfect little Coby back.
Fantastic!! Thank you Technology In Motion, I am so very glad I found you in time.