This is Finlay’s story. His Plagiocephaly diagnosis and treatment. Before Finlay arrived on 10th February 2013. I had never heard of Flat Head Syndrome. I never knew babies could be born with flat spots on their heads or go onto development them. Nor had I heard of torticollis, a tightening of the neck muscle. Then why should I have? I had a relatively straightforward pregnancy and we had no indication our baby would be born anything but normal and healthy. Although Finlay was born healthy, his head was far from normal. He had severe Plagiocephaly, a form of Flat Head Syndrome. Unusually, Finlay was born with it due to his positioning in the womb. This is Finlay’s Journey through Plagiocephaly diagnosis and treatment.
Looking back, Finlay’s head shape was looking evident on my 20 week scan. His head measurement was off the scale. At the time the sonographer did not see this as a concern. I would often joke my baby was going to have a gigantic head. I too, however, was not worried, I had no reason to think everything was anything but normal.
My waters broke on Friday 8th February, I was 10 days overdue. However, I never went into labour and was admitted to the maternity suite on the morning of Sunday 10th February for induction. I was getting close to 48hrs without any waters and there was a risk of infection. At this point it was discovered Finlay was an undiagnosed breech. As my waters had broken they could not turn him, so for safety, we elected for an emergency C-Section.
The operation was remarkably straightforward, but due to emergencies I didn’t get into theatre until late afternoon. Although not what we had planned our little Finlay arrived at 4.10pm weighing an impressive 8lb 150z. I didn’t notice straight away the odd shape to Finlay’s head. Even though I remember the midwives mentioning something when they were cleaning him up. Nor did I really notice how he struggled to move his head to the left and favoured sleeping on his right. It just wasn’t overly obvious if you weren’t looking for it. Looking back though it’s clear to see, especially when he was laying with his head to the side. The back of his head protruded to a point, while the left side was completely flat. His forehead was also misaligned and a had a lower left cheek and a smaller eye. This was deformation from the Plagiocephaly.
Finlay had the usual paediatric exams. The doctor said he had an unusual head shape due to him being breech. He had apparently grown under my ribs. Although I’m sure this had some influence, he was not breach at my 20 week scan and his head shape was obvious back then. The doctor said Finlay’s head plates had crossed to the point that his fontanel was closed, he literally didn’t have one!. However, I was told not to worry and his plates would move back into the correct position over the next few weeks. We were sent home with no advice other than it would right itself and not to worry.
After 6 weeks there was still no improvement but the doctors nor the Health Visitors were concerned. Finlay also appeared to be in quite a lot of discomfort in his neck. He still would only ever lie with his head to the right and if he tried to move it the opposite direction he became very uncomfortable, breastfeeding was almost impossible. He also started to suffer extreme bouts of reflux. However, we were told everything was normal everytime we questioned it. The only advice I was offered was to contact a cranial osteopath for private treatment. They could help with the torticollis in Finlay’s neck. This would be at a cost of £32 per session, but naturally, we paid.
We booked in for an initial 3 appointments and there was an improvement, it helped Finlay’s colic and reflux. In the end, we carried on treatment and had about 9 sessions over a 3 month period. His head seemed less pointy on the back, but his facial features were still distorted. The flatness on the right still seemed quite severe to me. When I questioned it, I was made to feel like I was overreacting. The advice from my Health Visitor was ‘it would self-correct and it didn’t matter anyway, no one is perfect’. I was fuming, why would no one take my concerns seriously? There had yet to be a significant improvement to the flat spot, would it really self-correct? I also wondered how could we tell if there was an improvement, there were no measurements to start with?
When the osteopath stroked Finlay’s flat head one day and said his hair would cover ‘that’. I went straight home and googled ‘wonky baby head‘. Finlay was almost 5 months now and I was worried for him. I came across Technology in Motion, an image and the word ‘PLAGIOCEPHALY‘. I emailed them with some pictures. They responded straight away and advised Finlay was suffering from Plagiocephaly and from the picture it looked to be within the severe section of the scale. I couldn’t believe that after 5 months I had some answers, all received in one email conversation with a private specialist. Why could the GP’s and health visitors not have informed me of this?
Finally a Plagiocephaly Diagnosis and Treatment!
I booked an appointment with the clinic, the initial assessment was free, and they would measure how severe the flatness was. The clinic advised that most people contact them with exactly the same story. However, they advised If a baby starts to shows signs of Flat Head Syndrome, repositioning techniques can be extremely successful within the first 4 months of birth. This is the preferred method of treatment, but this information was rarely given to parents. I’m not sure how effective repositioning would have been on Finlay as his Plagiocephaly was quite severe from the start, but I often wonder if we were given the correct advice if we would have been here today.
Technology in Motion were really informative and never once pressured us into treatment. In fact, they don’t even recommend treatment in milder cases. Finlay was measured, his flatness was 19mm which placed him in the severe category. He was given a Plagiocephaly diagnosis and treatment suggestion of a corrective helmet. There was no question about treatment even though it cost over £2000. We were just not willing to take the risk of it not righting itself, this was our little boy’s life, his future. It was hard finally having a Plagiocephaly diagnosis and treatment suggestions, but also a relief at the same time, but why hadn’t this come sooner?
Two weeks after the assessment Finlay had his helmet fitted. He took to it straight away, there were no issues with him wearing the helmet, even though he had to wear it 23 hours a day. He did get a little sweaty now and then, but it was the middle of summer and on the hottest days we let him have a breather. We were advised to contact the charity Headstart4babies who provide financial assistance to parents on low incomes. We initially paid a £500 deposit to begin treatment, and we had 3 months to find the rest of the money. Luckily Headstart provided us with another £900 and through them, we fundraised another £3000 – more than enough to pay the charity back and to add more to the pot for the next family.
Technology in Motion were really attentive at each review. They would examine Finlay and the helmet and adjust it if there was any inclination it was getting too tight. We had fantastic results in the first weeks and Finlay’s Plagiocephaly continued to decrease at every appointment. We were advised that he would most likely be in treatment for 4 months. After almost 4 months, Finlay seemed to be pulling more at the helmet, which was a sign of it being outgrown. Our final appointment confirmed he had in fact outgrown the helmet, slightly early, but in 101 days his Plagiocephaly had reduced to 7mm, his facial asymmetry had practically disappeared and Finlay was discharged from treatment and his helmet journey ended.
Today he is a normal happy 5 year old, he has no lasting issues from his Plagiocephaly diagnosis and treatment. Although I can still see a very slight mishap, you would never know his Plagiocephaly was so severe. As a mum to anyone who is worried about anything to do with your children, always trust your gut!
Do you have a Plagiocephaly diagnosis and treatment story? Did you have trouble getting a diagnosis too? Did you helmet or not? Please let me know your experience, especially if they are more positive than ours!