Finny's Plagiocephaly Journey

Finlay had.... or still has Plagicephaly a form of Flat Head Syndrome. Plagiocephaly is characterised by a flattening to the side of the head, this leaves suffers with an oblique shaped head when viewed from above (or a wonky head!), and in the more more severe cases, asymmetrical facial features as the facial bones become distorted as the skull plates move from their natural positions. It would take us almost five months to learn the name of Finlay's condition, we experienced a lot of stress and worry, with little support from our Health Care Providers. This is Finlay's Journey:

Newborn; notice his pointy head?
Finny was a little surprise baby, he wasn't planned and it wasn't until I was 12 weeks pregnant that I found out I was expecting. I had very few symptoms - I wish I could say this lasted the whole pregnancy (I got huge, I had frequent indigestion and frequent trips to the hospital due to unexplained bleeds). I was convinced he would come early. Finny had other ideas however and he finally arrived on the 10th February 2013 at 4.10pm weighing in at quite a large 8lb 15 for a petite 5'2" me, 10 days overdue.

I never got to experience Labour as my waters broke on 8th February and I still wasn't contracting on the Sunday Morning. I was advised at this stage that I should be induced to avoid infection. Well that's as far as that got, I was examined and the doctor announced that Finny was breech and that as my waters had broken they could not turn him, so I was booked in for an emergency C-Section.

His arrival was a slight blur, I am a panicer and everything had reduced me to a blithering wreck, but when I saw him he was beautiful and I didn't notice straight away the odd shape to his head. Even though I remember the midwives discussing his funny head when they were cleaning him up, I guess i just forgot. Finny had the usual paediatric exams, and the doctor said he had an unusual head shape and his plates had crossed to the point that his fontanel was actually closed, but not to worry and his plates would move back into the correct position over the next few weeks. Finny was actual showing signs of severe Flat Head Syndrome, I didn't know what flat head syndrome was and it would be another 5 months before I found out. We were sent home with no advice other than it would right itself.

20 week scan, something looks a miss - outlined in red.
I was advised that Finnys flattening had come from him being squashed and Breech, but looking back at my 20 week scan, it was prominent then, I think he may have been pressing on something while his head was forming (what I don't know!). He also had a head measurement that was off the scale from his his 20 weeks measurements, and this was due to the elongation at the back of his head. I remember the trainee sonographer questioning a measurement, i think it must have been this, but the her trainer brushed it off. I remember from my scan picture and these measurements that it was a little ongoing joke that Finny was going to arrive with a humongous, long head....little did i know there would actually be an issue!

After 6 weeks there was still no improvement in Finnys head, but the doctors were not concerned, nor were the Health Visitors. I was not advised about repositioning techniques and at this time, it was something naively that i didn't think about. After all we were told time and time again the flatness would right itself. At this point Finny seemed to be in quite a lot of discomfort in his neck, he would only ever lie with his head to the side and if he tried to move it the opposite direction he became very uncomfortable (and this made breast feeding impossible on the other side!) He also started to suffer extreme bout of reflux, sometimes silent, sometimes not so much!! Not even when I said to my Health Visitors I was worried was I offered any referral, except that I should pay to see a cranial osteopath who would sort it all out if he had a tightening in his neck (Tortocollis). Although this would be at a cost of £32 per session. Naturally we paid.

We booked in for an initial 3 appointments and I can honestly say there was massive improvement, it also helped his colic and reflux. His head seemed less pointy on the back, but his facial features were still distorted and his head flatness on the right side was still quite severe. I spoke again with my Health Visitors who ended up telling me it didn't matter and no one is perfect anyway (very very angered by this still). I was also told it would correct itself by his 1st birthday, but I had yet to see much improvement, and how could we tell if there was improvement if there was no measurements to start with?! Why was no one listening?? why was no one suggesting any remedies or treatment?? I asked if I should see the doctor again, but I was advised I could but they would say the same thing as them, so we continued with the osteopath appointments.

5 months plagiocephaly obvious from top
We must have had another 6 appointments and the last straw was when I was told by the osteopath as she stroked his head that, his hair would cover 'that'. I went straight home and googled 'wonky baby head' Finny was almost 5 months now and I was worried for him. I came across Technology in Motion and wrote an email to them with some pictures. They responded straight away and advised Finny was suffering from Plagiocephaly (a form of Flathead syndrome) and from the picture it looked to be within the severe section of the scale, but it was only a guess without measuring him.

I booked an appointment with the clinic as the initial assessment was free, if we got nothing else from it we had a name of the condition and a measurement. At the clinic they advised that most people contact with exactly the same story, but the advice from the Health visitors and doctors is extremely unhelpful and quite incorrect. If a baby starts to shows signs of Flat Head Syndrome, Repositioning techniques can be extremely successful within the first 4 months and is the preferred method of treatment, but this information is not given to parents. After 5 months repositioning is less effective and Helmet Therapy is recommended on severe cases and is most effective between 4 and 7 months. Treatment can start up to 14 months but after 18 months it will be ineffective. I'm not sure how effective repositioning would have been on Finny as his Plagiocephaly was quite server from the start, but I often wonder if we were given the correct advice, if we would have needed helmet therapy.

 Technology in Motion were really informative and never once pressured us into treatment, in fact they don't even recommend treatment on milder cases. Finny was measure and his Asymmetry was 19mm which placed him in the severe category. There was no question about treatment even though it cost £2000, we were just not willing to take the risk of it not righting itself, this was our little boys life, his future.

 measurements placed him in the severe category

Helmet fitted
So two weeks later finny had his helmet fitted, he took to it straight away, we had no issues what so ever with him wearing the helmet, even though he had to wear it 23 hours a day. Actually at this point he started crawling and it was like a little crash helmet! 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 here and there. 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.

Before and after models - A real Improvement
Technology in Motion were really great and attentive at each review they examined Finny and the Helmet and would shave parts of here and there if there was any inclination it was getting to tight. we had fantastic results within the first weeks and his asymmetry continued to decrease at every appointment. We were advised that he would most likely be in treatment for 4 months, which seems like an eternity, but it really did fly by. After almost 4 months, Finny seemed to be getting more and more uncomfortable with the helmet, pulling at it and we began giving him more and more breaks. Our final appointment confirmed he had infact outgrown the helmet, slightly early, but in 101 days his asymmetry had reduced to 7mm, his facial asymmetry had practically disappeared and  Finny was discharged from treatment and his helmet journey ended, but I still continue to raise awareness of the condition as there is still little advice to parents, it is still relatively unknown even though 1 in 4 babies will develop Flathead syndrome to some degree.

If you want to contact me I would love to hear from you, If you want us to publish your little ones journey, or you have questions on Plagiocepahly or you want fundraising advice you can email us here  although I am not a medical professional, my first advice would always be talk to your doctor or health visitor :)

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