*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.

SophR,I didn't mean to belittle the issue in any way. I just wanted to offer reassurance. Also, having 2 older children, I look back sometimes and think how important some things seemed, when they turned out to be fairly minor, but of course you don't know that the first time around! Not saying that Plagiocephaly is trivial, just that there are many more challenging things thrown at parents along the way and the ones which felt huge at the time, fade away as another one raises its ugly head!

Just read this and felt like crying. Ds has a flat patch and the right side of his forehead is ever so slightly more prominent than the left. He was 6 weeks premature. I feel utterly dreadful that he might have this problem, there's no way we can afford private treatment.

My DSs (2 of them) and my DD had flat heads as babies (I suspect because they were placed back to sleep). Their heads now are lovely shapes, actually very rounded with a nice nip in at the nape of the neck, and contrary to what the OP says this absolutely did correct itself in all three cases! As soon as a baby rolls over he/she will find his/her own sleeping position which will probably not be constantly on the back. I think the OP is alarmist and will make new mothers feel they can't do right by their babies. Irresponsible in my opinion.

i don't think it's alarmist at all
you can pick and choose what you want with everything, including parenting.

The NHS was never designed to cater for every medical procedure known to man. It was introduced to give basic medical care for all. Some people have conditions for which they wait (in extreme pain sometimes) for treatment on the NHS. If Great Ormond Street have estimated that 50% of babies are affected (at some point) can you imagine what this would cost the NHS? Interestingly, both myself and all my family and friends follow the back to sleep advice (which has been around now for over 15 years) and I have never been aware of anyone's baby who has a flat head to the point of it being a problem I have never known anyone who has had a helmet. I obviously have only ever come into contact with the 50% who are not affected which seems a bit odd to me. Personally I think the NHS spending £1,000 on every new baby to eliminate this problem is money that would be potentially better spent elsewhere.

Whilst i agree with the last post re funding, my relative is 3 and has a very flat head as a result of,a s the original OP said, being wrongly advised to just let itbe itll sort itself out. He's being seen by a specialist now but it doesn't always sort itself out and for those where it is at its worst it can be quite disfiguring.

'spine/hip problems due to car seats '

sorry not shoutinga s requested but whilst you may well be right reagrding 3-1 buggies (never owned one, never will) car seats in cars are essential and one of the best things ever to happen to infant safety. I'm sure you didnt mean in cars but just pointing that out

the guidelines say that you shouldn't use car seats for more than 2 hours at a time. Therefore the 3 in 1 travel systems where the car seat is clicked onto the buggy when they are tiny aren't a great idea, fine for a quick pop to the shops but not for all day, every day.

flat head syndrome is becoming more and more common - you can get the "panda pad" here which takes the pressure off the back of the head when sleeping.

joytothewhirled - i know of two babies this year whose mums were panicking as they were developing a definite flat side and the forehead started to become more prominent on one side too. both looked into the helmets and decided to wait and see if it worsened. in both cases it didn't get any worse and now they are 1 their heads have readjusted (now they are off their backs) you can't see any problem. so don't panic yet, just keep an eye.

DSs both had minor flat spots which they grew out of. DD had (and presumable still has underneath all that hair!) the most perfectly shaped head I've ever seen. Even the cranial osteopath commented on it The only difference between her and DSs is that she spent a lot of time in a fleece pouch sling and the boys both used the travel system more.

it's not being in a car seat that's the problem, some babies are in them for hours and hours even when not in a car

and it's not sleeping on backs either - its the contraptions that babies are in that compounds the problems - it's not one thing along

that's the point, babies shouldn't be in car seats for hours on end.
irrelevant if in the car or not.

hmm, its not irrelevant if they have to be in the car for hours on ends- better a baby with a flat head than a dead baby in an accident.

But i take your point that its about nt having them lying down all the time, its about giving them variety so they can develop

oh fgs
no one is saying don't put your baby in a car seat in the car. unless i have missed it earlier in the thread, but i doubt it.

Hi All

Just wanted to add my thoughts, my dd had an increasingly flat head by about 4months (to the point where i took her to the gp's about it)

i was sent to the physio maybe once every two weeks because she had tight muscles in one side of her neck (apparently very common), i decided to take her to the osteopath for a second opinion and he confirmend that she did indeed have tight muscles which was causing her to always hold her head on one side. Anyway he treated her in 3 sessions and the flat spot literally popped out. She has now got a very normal rounded head and after the first session started sleeping with her head facing the other way (something she had never done).

So maybe if your dc's are experiencing this you might want to try the osteopath first instead of one of these very expensive helmets.

or maybe i'm talking rubbish, i just know what worked for us!

Both my boys have had this - IT HAS RIGHTED ITSELF BOTH TIMES WITHOUT A HELMET

Sorry for shouting but I felt it needed to be - It's a common condition - it rights itself most of the time once the baby is up and about. You don't need a helmet. It doesn't cause harm. And remember, better a LIVE baby with a flat head than the alternative.

er amidaiwash I never said you did say that

I have as much right as you to post as I wish without someone being ridiculoysly dismissive with me

I dont know if its more common here in Japan for genetic reasons, but theres a lot of awareness of this here. The midwife lay my baby on her side with a towel just under her stonmach to stop her rolling onto her front. But they canT really move around much when theyre very newborn. Then I alternated sides. EVery baby shop sells tiny pillows with an indent (looks a bit like a polo mint shape) to stop this happening and we get told to alternate the baby`s lying position.

Have not read the entire thread but did want to add my experience. Ds1 had a form of plagiocephaly caused by being frank breech for most of the third trimester. My ribs prevented his head from forming properly at the sides and so it looked like a football with the pointed ends at the front of his forehead and the very back of his head. The malformation was so pronounced that when I put him down in his crib his head would flop over to one side or the other, which only exacerbated the problem. Luckily our pediatrician mentioned it at his one week check-up and when it did not seem to be rounding out on its own within about 6 weeks we started agressive positioning therapy. Except for one tiny flat area on one side his head rounded out very nicely.

Ds2 had a beautiful head when he was born. But, I had a lot of problems bfing initially. He would only feed rugby style on my right side. I preferred cradle hold on my left and went on in this manner for at least 2 or 3 months before realizing that he was turning his head to the same side to nurse every time and had developed a flat spot! In fact, dh was the first to see it. So we were back to positional therapy again. In this situation it did not take too long to fix but I can see where perhaps a bottle feeding mother who is comfortable always feeding the same way might not notice (as I did not) and cause plagio in this manner.

Some children do not round out on their own or with positional therapy, however, and there is a very brief window when a helmet can really help. For some reason this condition is much more widely known and talked about in the US than the UK. I was and continue to be quite surprised about this and I think it's really great to do whatever it takes to raise awareness about it. There has been some research that shows a possible link between plagio and special needs. However, I also think that some attention is justified even for purely cosmetic reasons.

I had my ds Feb 06 and was told about this condition by my HV on her first visit. She gave advice on tummy time and explained that we shouldn't leave ds on his back unless asleep. So this indicates that health professonals are becoming more aware.....

teafortwo I'm not sure how you think that your post was in anyway helpful I can only assume that you have very little knowledge on the subject.

Many mild/moderate cases will right themselves with time but for the more severe cases early intervention is key that means repostioning and possible physio to help improve head shape. I repositioned my son 24 hours a day for 6 months from when he was just eight weeks old and his head shape did not improve.

He was a severe case and given that repo didn't help his head shape it was unlikely that it would significantly improve on it's own. So I made the choice to get a helmet.
It was a choice based on no definate answers I just did what I thought was best for my son. Personally I think he'll glad that i did it as yes it did work.

As for the arguement "well it's not life threatening so there is no point worrying about it" well to be frank what a croc of s**t.

I see lots of babies with mild/moderate palgiocephaly. It's increased since the advice of advising parents to place babies on their backs to sleep. In our area we advise regular tummy time to try and prevent plagiocephaly occurring. I can count on one hand the number of babies (three in the past 5 years) I have seen who have required more intensive treatment and all had problems from birth. Not all babies need the helmet which has been uncomfortable to the babies I have seen wearing it - in all cases the parents couldn't wait to get rid of it.

I agree that the advice for regular tummy time, carrying needs to be more widespread though - we advise "back to sleep and tummy to play" (with supervision) to try and minimise the cases in our area.
It is good to raise awareness of this as it's a common problem, a problem that will often correct itself but in some severe cases will not without corrective treatment.

Arrgh! If people are going to post on medical topics I wish they would get their facts right.
It is pla-ge-cef-a-ly.

You need a special instrument to measure the assymetry, not a tape measure.

It is a medical condition, not a cosmetic one as it can cause other problems.

BTW my DD had to have a helmet and she loved wearing it. Once it was off she always had to have a hat on. It also helped with the inevitable bumps. She is almost 4 and absolutely fine now.