A new life and Discovering Plagiocephaly

I guess our story starts back in July 2012 - So much has happened since then it seems like it was a million years ago now. Back in that July was when Chris and I found out we were having a little baby. I had quite an uneasy pregnancy with lots of mild unexplained bleeds, but the 20 week scan showed there wasn't anything wrong with me or as we found out our little boy!

It was the 20 week scan when I initially noticed the odd shape of Finnys head, but I put this down to it being a scan picture - I did however joke on a number of occasions I was going to have a baby with an odd head - even when the letter arrived with all the  measurements from the 20 week scan, his head off the scale, but nothing was mentioned and so we didn't worry, we just had a baby with a lot of brain ( but the sonographer had obviously caught him in a position that pronounced his point)!!

Finnys 20 week scan with his outline highlighted to clearly show his elongation to the back of his head

 The pregnancy progressed somewhat normally, I still continued to have some minor bleeds but as the weeks went on and the closer to January 30th 2013 we got, the less we began to worry and the more I began joke about being so worried he was coming early, he would probably be 2 weeks late (hmmmmm haha).

January 30th  arrived and the stubborn little monkey refused to budge. We had some hope  at our sweep  (40 + 7) - The midwife basically said I was ready to go and didn't expect me to last the night. Well the night came and went, and so did the next and so did the next. Finally my waters broke in the evening at 40 + 9. I went to the hospital to get checked over as i wasnt initially sure it was my waters. I wasnt having any contractions so we were sent home and told to expect labour to begin in the 24 hours. It didn't, so back we went the next night, unfortunately the hospital was really busy and we were sent home again and told labour should start by the morning, but if it hadnt then I would be induced first thing. Well he he just didnt want to come out I still hadnt had any contractions (either that or I was having one easy pain free labour!).

When we arrived at the hospital in the morning we were given loads of information about the induction process before the Doctor arrived to examine me to work out exactly what drugs to start me on and then we were given the biggest suprise of all......

 The Doctor within seconds of checking me asked for a scan to br brought in and it confirmed the baby was Breech position!

This we were informed is probably why my contractions never got going ( I have no idea how every midwife missed this at every examination over the few days previous and all my antenatal checks over the last few months, but that's another story!). Finlay Was finally born at 4.10pm on 10th February 2013 by emergency C-Section. It still makes me emotional now seeing his tiny little face for the first time.

Well amidst the hustle and bussel of the theatre, Chris and I desperately trying to see Finny, midwifes exclaiming how big the placenta was - we hear 'hasnt he got a funny head', which measured in on the 98th percentile! To us however he was beautiful and perfect and his head wasn't really brought up again - only when the midwives advised us it was odd for a Cesarean baby to have such a funny head, but it will sort itself out in time but if we were worried we may want to see a cranial osteopath after 6 weeks if it hasn't.

Finny a few days old - you cant quite see here but his plates were very angular but you can see the elongation.

We noticed almost immediately that Finny only slept with his head to the right, but I guess as new parents we just didn't realise anything was really not right. After all we were told his head shape would sort itself out, and with that we guessed also him moving it. No one seemed to be worried, so why should we be?
We brought it up at his 6 week health visitor check that his head was still very pointy. I can only describe his head shape as flat along the right hand side coming to a point at the part you see in the picture above with his plates protuding at an angle not far of 45 degress - no roundness to itthose plates definatly were not rounded nicely!! Again we were told it would sort itself out naturally but maybe we should go to see a Cranial Osteopath, especially as he was born like it. I also spoke to the doctor also at his 6 week check and they said the same, but added they will keep an eye on his head movement, but definitely go see an osteopath about it all, so we did.

 Finny had his first appointment with the osteopath at 8 weeks old. She took lots of notes about the pregnancy and birth and suggested we see her for 3 sessions to begin with. Finny didn't seem to mind the treatment and after the 2nd appointment his head seemed to pop in at the angled section and he gained some movement in his neck. She decided he needed more treatment as he it was still quite out. We have been seeing her ever since. I believe she has helped Finny a lot, but I believe that her treatment isn't having as much effect as it did to start with. Finnys head has rounded out over the point, but it still protudes there, its just round now instead of angular. He is still flat across his right side, his ears are out of alignment, his eyes are different sizes and he still has a lean over to right. I mentioned this to her at my last appointment, she keeps saying it will sort itself out, but he will need to see her for another year now.

Finny from above at 17 weeks you can clearly see the mis-alignments, flatness and asymmetry of the right brow. A lot better but still quite sever.

I decided to speak my concerns once again with the Health Visitor when I had Finny weighed last week. She basically told me that it will get better, he probably wont be perfect but no one is and it doesn't matter if he is a little wonky as everybody is different. I was actually quite angered at this, I didn't say I wanted to make him perfect, all I really asked about was her advice about treatments including osteopaths and helmets and if they thought it was bad or not - but she said she didn't know much about either except to keep assuring me it will sort its self out in time and she had seen worse. Maybe it will, maybe it wont - Do I really want to risk it or not? Don't get me wrong in mild cases I firmly believe with plenty of repositioning it can be reversed, but what about the more sever cases? So I guess my main question that had yet to be answered what - Just how sever is his flat head? all I seem to get is the bog standard 'it will round out' or 'dont worry I've seen worse' . She also advised me that as Finny was still so little there isn't much that can be done to exercise his neck. I asked wether it was worth discussing it with the GP, she said I can go but they will say the same.

So, it was not having answers to anything that led me to research about his condition and it was only through my own research I found I wasn't alone and this 'thing' it actually had a name - 'Plagiocephaly' there, a name, in black and white - why hadn't I been told this is what he has? why has it taken 4 months and my own searching just to have a name?!

Well I also discovered that the NHS only regard the condition as purely cosmetic and therefore do not fund treatment. They believe with repositioning, heads round out naturally and they do not believe there is any scientific evidence to suggest helmet treatment works. Its hard, especially when there are so many examples of parents believing their children's heads will round out - only to realise they haven't by which time they are then to old for treatment. Also with so many success stories of parents who have paid to go private and have Helmet treatment, who do you believe?

Well I for starters need to hear both sides of the argument. I have contacted a clinic and provided the above photo and the initial feedback is his asymmetry looks to be about 15 - 20mm. I believe this is classed as severe depending on other measurements that will be checked precisely - for the first time in ages I feel like I'm not a fussing nagging new mum - he has got a rather flat head.  We have been invited in for an initial assessment which is free of charge. I just need to confirm the date.

I find it hard to believe the NHS don't recognise the seriousness of the condition. To me and many others this is not just a cosmetic issue. There is early research to suggest links between Plagiocephaly and learning difficulties. Vision and hearing problems. Not to mention jaw alignment issues which can effect speech and eating. On top of this there are issues wearing glasses and cycle helmets. Finally, the children will one day be at school where they no doubt will have to suffer torment and bulling over their lopsided features - is that fair?

Well......this is my introduction and rant for today - I will keep you posted on all things Finny as and when and I will also find some articles to post regarding the condition. So adios for now.

Hx