*PLEASE READ THIS* - IT COULD HELP YOUR BABY!!!

[torgrosset]

Hi! My 4½ month old daughter has plagiocephaly (pronounced play-gee-o-kef-a-lee) also known as flat head syndrome and I am wanting to raise awareness with other parents. My daughter has a severe case & her flat spot is assymetrical by 25mm. It is also affecting her ears, forehead and face.

Plagiocephaly is an increasingly common condition in babies in the UK, whereby the head has become flattened at the back. Great Ormond Street Hospital says that some reports estimate that it affects half of all babies under one. It can be caused in the womb before birth, after birth by stiff neck muscles (torticollis), or by excessively long periods of time spent with the head resting in one position on a firm flat surface.

More cases of plagiocephaly have been seen since the advent of the ?back to sleep? campaign, where parents are advised to place their baby to sleep on its back. This advice is good and is saving lives. However, the advice is not complete and should be supplemented with recommendations that would ensure that plagiocephaly is avoided in the first place ? or improved if it is already present. Simply recommending that babies be carried more, be given regular supervised ?tummy time? during the day, be taken off their backs and not placed against hard surfaces continually, would dramatically reduce the incidence of plagiocephaly in this country.

Where plagiocephaly is suspected or even diagnosed, many midwives, health visitors and GPs consistently advise parents that their babies? heads will round out on their own or that future hair growth will cover the deformity. This is simply not true in many cases and is advice that is unacceptable to the majority of parents.

If there is a plagiocephaly or deformity, and the baby is under six months old, an approach called ?repositioning? can be used. This is where the parents minimise the amount of time that the baby rests on the flat spot of the head.

If a baby is over six months old, or if repositioning has become impossible due to the baby?s increased mobility and strength, then cranial remoulding treatment should be considered. A custom-made helmet gently reshapes the baby?s head as it grows, giving it greater symmetry and a better shape. The baby wears the helmet for 23 hours a day, typically for around 12-16 weeks. The helmet is designed to create a pathway for the baby?s head to grow to a more symmetrical shape as it develops. It does not prevent normal growth from occurring, but simply redirects the growth to the places that need it. It fits snugly on all areas of the head except the flattened part, holding them steady and gently guiding the growth only to the flattened area. Treatment is currently not normally available on NHS & parents have to pay around £2000 for private treatment.

There is an on-line petition being run to try to get the NHS educated & to change their views of plagiocephaly. The link to the petition is www.ipetitions.com/campaigns/plagiocephaly/

If you are worried about your babies head shape, there is a UK support group groups.msn.com/PlagioUK/plagiouk.msnw that offer loads of help & advice.

Please help us to help other babies.

Thank you.

My DS had torticollis when born, would only turn his head one way and developed a flat area. Hated tummy time and would sleep on the flat spot, to the extent that if I slept him on his side in a wedge he would turn his head to the flat spot. I consulted my plunket nurse (Health visitor here in NZ) and my GP, got a paediatrician's referral and asked about helmets, as a friend in Switzerland had one for her son. My paediatrician said that in NZ they don't recommend helmets as the research hasn't shown any difference in results than 'wait and see'. I was quite upset as I didn't want my wee boy to be deformed. I have since found out that some babies in NZ have had helmets, just not where I am. I was given advice about repositioning and stretching exercises. I wish I had taken him to a physio as soon as the flat spot started (I did take him to cranial osteopath).
He is now nearly 20 mths, his hair and head have grown so it is not nearly so noticeable, but it is still there. My paediatrician said that the head shape they have at 2 is the head shape they will have for the rest of their lives. So no #1 haircuts for my boy.
I think it is very important for new mums to be aware of this, when babies are born their skulls are the thickness of a credit card and can deform so easily with constant pressure on one spot.

I beleive that the increase of this is in part due to the lying position and the fact that many of us use our travel system car seats for our little ones to sleep in.

My mw told me not to leave my ds in the car seat for too long. I certainly noticed that the back of his head seemed to be getting flat so I stopped using the car seat for anything other than driving and his head shape seems to have corrected itself.

It's good to know about all this.

Been reading this thread with interest. Can see that a lot of people, parents with children who have this condition and parents with children who do not, all have a lot to say.
Some plagio rectifies itself and some don't. If the child still has it after 12 months it is unlikely to grow out. If left untreated then after the child reaches 18 months there is no cure as the skull fuses.
My son was born with this condition due to lack of fluid in the womb. He was not diagnosed till 12 months old and has started starband treatment. Please don't belittle parents who seek treatment for their child, no one has any right to do that. Also don't tell parents that it will right itself often it does not. All cases are individual and not all cases are severe. Getting treatmnet has been the hardest most emotional journey I have ever had to endure and until you are in this position do not judge. Plagio is cosmetic, there is also a website for adults with plagio who were not treated and wish they had been. The NHS do not pay for this cosmetic treatment but in certain circumstances they par for breast reductions and enlargements, and tattoo removals if it is effecting the adults state of mind. If our children with severe plagio are not treated who knows what their state of mind will be as an adult. Apart form having their skull cracked there will be no treatment and they will have to get on with it.
My son is too young to have a voice and fight for his rights, Myself and my husband do this for him as his parents.
So please don't shallowly prejudge parents for getting helmets. It is an extremely draining and hard journey and it is done with our childrens best interests at heart, and that is the only reason we do it. For love of our kids. NO-ONE can honestly say if the condition will improve in time, and would you like it on your conscience, not to treat your child and for them to go through life with a deformity. That is what it is, a cosmetic deformity.
Please bear this in mind when discussing flat head syndrome and the children who by no choice are born with it or develop it.
Mandy

One of the best ways to prevent plagiocephaly from occurring in the first place - or to encourage the head to grow into a more rounded shape if a child is under about 6 months of age - is to ensure (preferably straight from birth) that they sleep with their heads resting on a different part each night.

Lay your baby to sleep on its back. Then, in a three day cycle, place the head to the left for one night, straight up (looking at the ceiling) for one night, then to the right for one night. Then start at the left again. This way, the heaviness of the head is not always putting too much force or pressure on one point.

One of the main causes of plagio is neck stiffness or torticollis in one side of the neck, meaning the baby finds ist hard to turn the head one way. If you suspect your baby has this, ask your GP for a referral to a padiatric physio (paid for on NHS) who will show you some stretching exercises you can do at home to resolve the torticollis or stiffness.

Baby carriers, regular (supervised) tummy time, and neck supports can all help massively too.

A good site with more info is www.plagiouk.co.uk

It isn't a cosmetic deformity. It can cause problems with eyes, ear infections and head aches. I know of a child who has untreated plagio and they now have problems with eye tracking. If the child needs glasses it is hard to get them fitted as the ears aren't in allignment. Just one example.

Haven't read all the thread, but I remember when ds was just born someone said that many afro/carribean babies didn't suffer from this due to being carried around in slings a lot. Hence ds was carried around in a sling a lot too!

And that the car seat also contributed as many babies are left in them when we come home from a journey if they have fallen alseep in it.

The problem I had with repositioning was that DS would resist it or wake up. He was a pretty bad sleeper so it was very difficult to do anything that would wake him. Placing a toy to one side etc wouldn't work either. Or I would get his head in the right position (i.e. off the flat spot) and go in 20 minutes later and he would have shifted to the flat spot again (and wake up when I tried to move him again). If I ever have another child, which is pretty unlikely, I will side sleep them.
Although having said that I have seen some kiddies that were only side slept and they have a different form of plagiocephaly where their heads are very narrow and long from front to back, so I think some back sleeping is necessary too to even it all out.

Our DD is now 2 yrs old. When she was born, the right side of her head was flat and her forehead was a bit deformed... DH and I didn't notice it until when she was 1 month old and the HV, family members mentioned it!!! Until she was 6 months old, she still couldn't turn her head properly to the left, and of course it didn't help for the shape of her head. She had few scans to confirm that the plates of her scull where not growing on the top of each other. Our DD was and still is healthy and only the shape of her head wasn't as round as all the other babies... we were told about the helmet but the paedatrician didn't insist that she should wear one... she told us that no test were made to proove the efficienty of them! So by 8 months old, DD started to move more her head around, became very mobile, was walking at 13 months, and is now growing the most beautiful and curly red hair and nobody can notice that she had plagiocephaly!!!
If I read this topic conversation until 1 yr ago, it would have put me in great distress... but nobody should worry like that, I promise our DD is gorgeous and nobody is noticing it anymore!

Hi.
I've skimmed through all the messages in this topic and I'm amazed to see that no-one seems to mention SleepCurve mattresses!? Huge apologies if I've missed it and it has been mentioned, but I felt compelled to post just in case no-one had heard of them.
My acupuncturist told me of these matresses when I was pregnant and I used one from the birth of my son to approximately 9 months old. He is now nearly 1, doesn't sleep terribly well at night, but that is another story, but he has no flat spots on his head.
I urge everyone to look at sleepcurve.com or angelcots.co.uk. I'm sure there are other places to buy from but it was the latter that I bought from.
The same acupuncturist also practices Cranial Osteopathy. I'm sure she said that this can help babies who have flat spots already.
Best of luck x

Sunandmoon - thank you! Your post has helped me feel better. My 14 months old DD has a flat head at the back and her forehead is very slightly more prominent on one side - it is so slight that no-one, not even DH and I, had noticed it until her consultant showed me this morning! The consultant said that it had been caused by her inutero position, which makes sense. She was consistently head down and started to engage at 26 weeks gestation!

my poor ds was born with a long pointed head and i was told it would go down - the top pointy bit did but he developed an extremly flat head at the back as if there was no defenition from where his neck ended and head began, my step father cruelly said what have you been doing to thge poor boy , smacking him with a frying pan - needless to say i dont really talk to him much. this was at three months doc said it would reshape itself - and now aged 2 it has changed a bit and with out sounding cold his head is more swede shaped than rounded - wish doc had listened....... and you right they dont tell you enough about it ......

just wanted to 'bump' this message up as my son has plagiocephaly and is currently having starband treatment.

I have been shocked to be frank by the attitudes of some of the posters here, appear to think that having a deformed skull (because that is what it boils down to) is of little consequence.

My son, now one year old,was born with a perfectly ordinary skull.I first started to notice a flattening on the left side (it is more common on the left although no-one knows why fully).It got worse and worse and over the next four months I took him to the GP three times. they all said yes, he has a flattened skull but it doesnt matter, one gp said they told parents it would right itself but actually they had no evidence to back that up and by the time a parent might realise it wasnt going to get better 'it would be too late so they wouldn't come back. By the time he was seven months old it looked as though my sons head on the left side had been 'sliced off'. His forehead and cheek on the left side was bulging and his ears were completely mis-aligned.

We finally, after much soul searching took him to see an orthotist privately and decided to start the starband treatment. he has been in his band (helmet) for 5.5 months now and his head is vastly improved. The bulging has gone and it no longer looks as though his head has been 'sliced'.he will probably be in his band for a few more months before we call it a day. For anyone who says it is cruel etc etc, my DP agreedfrom the start that we would give it two weeks and if DS was distressed after that we would chuck the band away. However he has never displayed much awareness of his band even from the day it was fitted and to be honest we are now worrying about how he will manage without it as it is like protective armour lol!!

Since expriencing this with DS, I have done a lot of researchon it. I wotk in the heakth field and am lucky enough to be able to access clinical research....what I have found out has made me REALLY MAD!!

There is good quality research on this done by other countries, in Europe and USA to name a few. Most of the studies come up with the same conclusion, since Back to sleep (absolutely essential I am totally in favour obviously) there ahve been a proprtion of babies who will suffer from this condition and some studies are now trying to find out why. About 1 in 100 babies will develop it in a severe form, although many will have it very slightly and will not require any form of treatment.

For those who have it about half will have some improvement by age two or three. the remaining half will not, and most research does not say which children will have most improvement ie whether the children with mild condition to begin with tend to improve most or vice versa.

Plagiocephaly (flattening on one side only) and bradycephaly (flattening at the back of the head) do not cause brain damage or developmental problems but can cause, in severe cases visual, hearing, jaw (dental) problems and obviously can be disfiguring to a greater or lesser degree with all the attendant problems.Obviously this will NOT be relevant to MOST parents reading this post whose child may have a slightly flattened head, this is referring to the extreme end of the spectrum.

As far as treatment goes, most NHS trusts do not routinely fund treatment and seem strangely reluctant to undertake any research itself' However I understand that the government has asked NIHCE to look at this, probably in response to pressure groups. In the USA this condition it recognised and treated and covered by most health insurance. I find it madness that people would say the nhs should not bother to offer treatment for this even to extxreme cases when they will treat virtually everything else that people ask for and I am sorry to say often inflict on them selves. if we cannot offer pur babies the best possible chances then why are we bothering....

My heart goes out to parent swho want treatment to their children but cannot find the funds to do so. Myself and my DP are not rolling in cash and made the decision to cancel a much needed holiday and also were unable to afford a naming ceremony for our son in order to pay for the treatment. Obviously we are still very lucky that we had that option.... I undertand that for peopl whose child may have sever e brady/plagio cephaly there are several charitable funds to help them.

The sad thing is that if we had gotten proper input when DS was tiny all this could have been avoided, in hindsight I believe he needed a good stint of physio as his neck was always tilting to one side. being a new mum I had no idea if this was 'normal' or not.

I am sure plenty of people will shoot me down for writing such a long post and 'scaring'new mums but thats too bad......my advice is to demand decent informed care from someone who knows their stiff and not be fobbed off if you are worried.

Sorry, apologies for the numerous typo's in previous posts, very tired!!

Good luck to you, roseblade - DS1 had a starband, too, to correct his plagiocephaly which was caused by torticollis. We didn't sport the torticollis, and our GP and HV didn't either, until he was 7m and he'd developed severe bracycephaly and moderate plagiocephaly.

DS2, now 3m also has torticollis, but we spotted it before he was 6 weeks old and are now doing exercises to prevent it, and I'm confident we can stop him developing a flat head like bis brother.

The good news on the starband is that, now, aged 2, you'd never, ever, guess that he had any skull deformation at all.

Hi roseblade. Plagiocephaly can be quite a contentious issue, and having run a plagio support group for the past three years, I can say I have come across practically every argument for and against treatment and intervention. Ultimately, I think it is a personal decision on whether to treat or not. We chose to treat our son, and I set up the group so others could find out about the condition and the options for treatment. Most importantly, we try to raise awareness that the condition exists and is almost entirely preventable.

To prevent plagio, babies need to get a lot of (supervised) tummy time. Since the back to sleep campaign, babies are not spending much time on their fronts, so their neck muscles are developing more slowly. This can result in - or worsen - neck stiffness and torticollis, causing or worsening plagio. So it's important that babies get time on their tummies - just a few minutes a day to start off with, then increasing it gradually. They very quickly become accumstomed to it. Also, babies should always be placed to sleep on their backs, but it helps if the head is turned to the left for a couple of nights, to the right for a couple, then looking straight upwards for a couple - and this pattern be rotated. This keeps the pressure off one area of the soft skull and helps avert plagiocephaly.

For your info, I thought I'd let you know that NICE is no longer going to be reporting on treatment for positional plagiocephaly. It decided - more than a year ago - that the treatment does not come under its remit as it is not considered an interventional procedure.

Also, right-sided plagiocephaly is actually the more common. This is due to the fact that the most usual position for a baby before delivery is LOA (left occipital anterior). That is, the left back side of the baby's head is most to the front, therefore, the baby is facing the right buttock, and hence the right hand side of the head is pushed up against the pelvis. Also, postnatally, apparently 80% of babies turn to the right anyway.

If you want any more info or help from our near-1000 membership, have a look at www.plagiouk.co.uk

Good luck with the STARband treatment. It worked brilliantly for my son.

my ds3 has this just a tiny bit. It is very interesting to read all these comments. I mentiones it at clinic and was told not to worry.
I always put it down to the fact that we co-slept with my first 3 children and ds3 always slept in the cot (his choice not mine.)not that the mattress is particularly hard or anything. Dd2 born after ds3 has no sign of this and she also co sleeps. Who knows!

I hate that people are told not to worry and just accept it! Health professionals are not infalable.

Hi Plagio Uk
Thank you for giving people more info on this topic. Its a real shame NIHCE have decided against looking at this issue, if only because they would have had the clout to look at the available evidence and giving parents some reasonably reliable guidelines. I hate to be cynical but I believe the problem is that the NHS is concerned about opening a floodgate of people wanting treatment for their babies which is daft in my opinion as only a very small number would actually require treatment. Even if parents pay privately for treatment the condition still has to be moderate or severe for the clinic to offer treatment and its not as if there are clinics springing up on every street corner lol!!

Without going into details, when i was a child I had a 'cosmetic'condition which was not able to be treated at that time on the NHS. It was something which affected my self esteem and confidence deeply and I still carry the baggage as an adult, despite the fact that my (single)mother managed to find the several thousand pounds at the time which allowed me to get treatment privately. A few years later the NHS started offering treatment for this and I suspect that when our childrens generation grow into adults and bring lawsuits against the people that denied them treatment the same will happen with this problem.

If we have another child then I will definately be getting them checked out early on by a paediatric Physio as I am convinced tight neck muscles were to blame for DS's plagio, his little head always tilted round to the same position. I found some exercises on the web but TBH found it quite difficult to put into practice without some professional help (was afraid of hurting DS as well!!)

I will definately check out the Plagio UK website and hopefully others reading this thread who are worried will too.

Thanks again.

Plagio uk
having re-read your post I now realise why just a few stummy time could help prevent this plahio. Couldnt understand before why just a few minutes could help as that would still leave 99.9% of the day potentially with head against a surface, but now realise it could help to stretch the tight muscles.... talk about the penny taking a while to drop lol!

sorry 'stummy'(??) should have read 'minutes tummy'.

I can't believe those comments by the so-called 'medical professionals'....ajmum and teafortwo...

You people are narrow minded 'sheeple' unable to think for yourselves but quick to criticize others' opinions. Everybody is just trying to do what they think is best for their children. It's great that you both have kids who's conditions did 'sort out' or didn't have kids with this, but what right do you all and others who judge have to make blanket statements?

I also noticed ajmum's comment against the US. Great..I'm American and I don't care if you hate America or Anericans, but the US and other countries are lightyear's ahead of the UK in addressing this problem. Maybe too many Americans do get the helmet...maybe not, but in the US....we demand to be told the facts..sure some of the crap is crap, but we're considered intelligent enough to know how to tell the difference between the two. This narrow minded behavior is so common to me as a foreigner living in the UK...this same stupidity is also behind the reason your country thinks you are all too stupid to understand and process any information about formula milk and anything about the chickenpox vaccine...oh yea, I bet you narrow-minded people are against that too...that's right no child ever died of the chickenpox did they....off my soapbox here...

You folks should be angry that your government and the NHS thinks you are too stupid to handle the truth. Truth is the NHS just doesn't want to pay for this, and they like keeping you all in the dark ages and some of you seem to enjoy being in the dark ages.

Before anybody gets really mad, I'm not generalizing against all folks...just those like the above that make the stupid comments.
All of you have the Internet...you're posting here......ignore the NHS and go outside and look at some of the major US websites or sites from other countries that don't hide the facts and make the decision for yourself and I agree with torgrosset..you GO GIRL!

Parents magazine is a great publication in the US..go to their website occasionally and you'll see what I mean...I laugh ...actually want to cry at times...of the propaganda that is in your UK magazines...it's so 'sanitized' and birth is always natural and things are always just fine...

For the recored, we paid private for our daughter to have the chickenpox vaccine in the UK, and our DD does not have this condition, but I've seen it in several of my friends kids and I cautiously mention it and 100% of the time....so far...they tell me their HV or GP said it WOULD SORT OUT..and yes I'm yelling ...sometimes it does but sometimes it doesn't...Wake up and demand that you be heard, but the worst thing is that the propaganda machine doesn't in many cases even allow you to know the truth.

my ds had this i used to lay him on other side of head and turn him regualy he had a flat head from my 20 week scan check thank fully after i made sure he laye don othe rside and turned him regually you would never know now that he had it the whole of his l side was flat but all ok now but because i was aware and took prevention

i was also told it would sort itself out

I really don't mean this horribly, and I hope I don't sound like a pedant, but Bubblagirl please could you add some punctuation to your posts. Quite a few times recently I've struggled to understand them which is a shame as you always have interesting points to make!

My DD2 is 1 in a few weeks. She developed a flat head a few weeks after birth. Everyone noticed it and I was very worried.

I searched the net and found some terrible stories about plagiocephaly. I wasnt sure what to do.

I spoke to my health visitor who said it is increasingly common due to the back to sleep campaign and up to 50% of babies now have it to some degree. She suggested tummy time, holding the baby a lot and not leaving lying down flat as much as I could manage.

At 3 months the flatness seemed more pronounced so I took her to my GP. He said "Gosh it is quite flat" which worried me even more.But he said similar things to the health visitor, advised me it would improve as the baby began sitting up and becoming mobile.

I really wasnt sure but I spoke to a friend whose DD had the same problem 2 years before. She had been given the same advice and her DDs head had improved a lot.

I looked around and the 'easiest' advice seemed to be to lie your baby at different ends of the cot each night so they would naturally turn the opposite way - didnt help too much with DD as she sucks her thumb and always lay on one side. I also bought a cheap baby neck pillow and lay it backwards with her neck on the fat bit of the pillow which meant the head wasnt always flat on the mattress.

In about 8 weeks there seemed to be an improvement. Six months on her head still has slight flatness but it has improved significantly and I stopped using the neck pillow a couple of months ago.

This seems to be an increasing problem. Sorry my post is long but I just wanted to reassure some mothers that it can improve with some of the easiest of techniques (totally dependent on severity of course).