*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.

Why have you posted this multiple times under different subject headings and topic areas??

because i'm trying to raise awareness & it's something I feel passionately about!

Petition

Support Group

Hope that helps.

I think I read something in the paper about this a while back (News of the World I think!) and the little boy had a helmet thing.

Must say had never heard of it before, how common is it?

(I finish at 4 btw so may not respond straight away).

My DD has plagio (first noticed at 3 months). She has seen a paed who advised no treatment and I am very happy with that decision. I did a lot of research and fretted over her head shape but am now comfortable with not having gone down the helmet route. Don't get me wrong - her head is still slightly misshapen at 18.5 months, but it is really not noticeable to anyone who is not looking for it(her ears are misaligned but so are mine!).

I am very suspicious about people touting helmet treatment, especially in such a detailed way (eg explaining the pronunciation).

This condition is reasonably common, but I've only started seeing 'posts' and articles on it since some of the US companies that make the corrective helmets have started operating over here. Being a new parent is a really emotional time and you fret about every little 'problem'. The helmet companies play on this with their advice that babies' heads can only be corrected if treatment starts early. Obviously if parents wait is out and the head gets better or hair covers it, they will then discover that they don't need the helmets.

Because of my DD I look at lots of babies' heads and have seen a number of plagio cases (mostly very very mild) among my acquaintances' children. I suspect they will all look 'normal' once their head grows a bit more and once their face grows in proportion to their head.

There are a lot of serious medical concerns that the NHS should be treating and I don't think plagio (unless it produces noticeable facial deformity) is one of them - sorry.

also thought this phrase odd: " not placed against hard surfaces continually" (ie who does do that?)

It's really not polite to put tens of these posts all over mumsnet. One or two should be more than enough ... ideally without mad caps and exclamation marks in the title.

Clearly Torgrosset you have direct experience of this and want to share your expertise and opinions - just think that you're at risk of dilluting your message by continually raising a new thread on the topic. If you would like this to remain on the boards - then a quick 'bump up' every so often would work instead and allow all opinions to be contained on a single thread....and not only that - it would save you the job of having to repeat yourself lots of times or potentially answer the same questions more than once!

My original point was not a complaint as such...just thinking that if you really want to raise awareness, there's a better way to do it....

The repositioning advice should be promoted by health visitors especially when they talk about the importance of tummy time. They probably don't mention the possibility of head shape problems as they may fear some parents not following the back to sleep campaign if they find out that this might lead to head shape problems. My DD really favoured one side and I mentioned it once to my truly wonderful midwife who thought there was no problem. In hindsight I should have been gently repositioning my DD. She probably strained some neck muscles when she was yanked out by the forceps - poor thing!

I am really shocked by this my son is 11 and he has a flat spot at the back of his head he has lived with it all his life we were just told it was a family trait -one great uncle twice removed. The health visitor used to measure his head but his face isnt deformed or anything could this be the same thing.

I saw something on the BBC news (Local) a while back about this - I'm with some of the others that say unless it's causing a lot of facial deformity I don't think treatment is nessecary - DS1 had a really flat head (well he was a lazy little sod and SCREAMED on his front so spent the first 6 months of his life on his back...oh and couldn't roll). He's got very short hair, but hardly any flatness at all...no more than DH does - who's got a funny shaped head at the back like the rest of his family (don't tell him I said that )

Actually NQC..torgrosset can do what she wants.
It isn't your job to tell people what and how they should post.

Your efforts are commendable tg.My nephew experienced this and i know my sister feels the same as you.

There has been at least one absolutely distraught poster talking about this recently. It's clearly not a minor issue for everyone. I'd never heard of it tbh.

if torgrosset is new to mumsnet she probably doesn't realise that a lot of us use active convos (or what that is) and that as a result we see ALL of her messages on the same page.

She is assuming, fairly I think, that people browse different topic areas and thus wants to get the greatest exposure to this as she can.

I think it's a very valid post... my cousin has plagiocephaly although it is unnoticable now her hair is much longer.
It is definitely something midwifes/health visitors should warn you about when you have a baby

I had vaguely heard of this but didn't realise it was such a big problem nowadays.

But why is it a problem now? What about babies born in the pre-frontal sleeping days? Afaik, front sleeping was a new thing, introduced in the second half of 20th C. Until then, according to my mum, babies always slept on their back or side, so why don't we hear of a lot of older adults with this problem? Maybe they were carried more, had softer mattresses or something?

I know, Suedonim, and babies generally lie with their head to one side to sleep don't they, even on their backs? Is it car seats and all those head-hugging type cushions in bouncy seats that cause the flattening?

Actually, ds has this. His ears are in line, and you can't tell from the front, but if you look at him from behind or above, its very obvious. I spoke to my gp about it, and he told me to go back if it hadn't corrected itself by 6 months. He's not 4.5 months and still has it.

The men in dp's family start losing their hair in their 20's,in fact my dp is, but refuses to shave his hair as he has a funny shaped head, and i don't want ds to be afraid of this, or feel he has to have longer hair to cover it up. To cut a long story short, if his head hasn't improved, i shall have something done for it. For his own sake

It is good of you to raise awareness, as most people would be too scared to mention it. I know i was, but my mum kept telling me to tell my gp, so i did.

hI SORRY IF i OFFENDED ANYONE BY POSTING MESSAGES IN DIFFERENT TOPICS! - I'M NEW HERE & WANTED TO CREATE AS MUCH EXPOSURE ABOUT THIS SUBJECT - IT IS BECOMING MORE COMMON & SOME SIMPLE ADVICE FROM THE HEALTHCARE PROFESSIONALS WOULD REDUCE THE NUMBER OF BABIES DEVELOPING IT. EVERYBODY GETS TOLD TO BACK SLEEP TO MINIMISE SIDS YET DON'T GET TOLD THE CONSEQUENSES - IE THE POSSIBLILITY OF PLAGIOCEPHALY. YES i AGREE - MOST CASES ARE MILD & NOT NOTICABLE ON A TODDLER/ADULT HEAD - MY OLDER DAUGHTER HAS IT IN A MILD FORM. HOWEVER, EVERYBODY SHOULD BE ADVISED THERE IS TREATMENT AVAILABLE & WAYS TO PREVENT IT. ALSO, THE PERSON WHO WANTED TO KNOW WHAT HARD SURFACES BABIES ARE LAID ON - CAR SEATS ARE JUST ONE EXAMPLE. IF ANYBODY WANTS ANY MORE INFORMATION, PLEASE LOOK AT WEBSITE PLAGIOUK - THERE IS LOADS OF INFO ON THERE!

My ds was premature & in the neonatal unit here in Portugal the babies are all put to sleep on their sides to minimise risk of suffocation if they spit up. I consequently always put ds & dd to sleep on their sides - also seemed more natural when they are really tiny & very curled up still - perhaps another reason they use this position for premmies? Anyone know why back sleeping is always recommended instead of on side? Until baby starts to roll over they will stay sleeping on their side or on their backs. Neither baby ever managed to get onto their tummies from a side sleeping position

Maybe it is to do with car seats, CarolinaM. I hadn't thought of that but it makes sense as even with the padding, they are quite hard, aren't they?

Wads, as I understand it, side sleeping is safer than front sleeping but not as safe as back-to-sleep, hence why they recommend back sleeping.

I had my first baby when front sleeping was all the rage but my old-fashioned midwife didn't agree with it and recommended side/back sleeping. So that's what I've always done with my babies. They've all got normal shaped heads, though.

cot mattresses are quite firm. pre-front sleeping I think a lot of people put babies to sleep on their sides.
my ds always slept on his side because he had breathing difficulties

i think it probably is more of an issue for people whose babies don't move their head at all or prefer one side to the other (or don't put their head to the side)

If you leave your baby lying down/sat in a car seat etc for the majority of the time then it will become a problem.

Oh goodie another thing for parents to worry about. Funny how easy it is for professionals to dish out these pieces of information without the research to back it up, the support and a proper explanation when it's not them who has to worry about it happening to their own kids. Why do they do it? I've not had this problem with any of my kids but two slept on thier fronts (yes I worried about that too lol!), one wouldn't sleep unless slightly upright until she was 7mths old and my dinky donut is perminantly attached to my boob in my bed (oh and guess what I worry about that too ) so he's always laying in a different position.

That said I can understand from your post why you would feel so passionatly about it but I think rather than posting to scare the life out of new mums on here you need to get shouting at the professionals to relase some PROPER information on the subject.

p.s as you're new you probably don't know but typing in caps is considered shouting and rude Just a heads up for future reference.

Tashxx

i don't think it's scaring the life out of new mums.

it's important information that for some reason jsut ISN'T given out by health professionals. Yes, they need to be targetted to, but that doesn't mean that this thread isn't perfectly justifiable.

this has been a problem ever since the back to sleep campaign began... so it isn't a new thing particularly

One of my ds's has quite a pronounced shelf on the back of his head. You would have to feel it to notice it though. I always put it down to family trait because his dad has it and so do a couple of his uncles. It has never worried me.

Until now.

whoa.. mind those capitals torgrosset - its called shouting! It is quite hard to read too. Thanks for sharing this info though!

Our babes sleep on a millet or barley mattress in a wicker basket first 6 months of life. The millet shapes to their head which cot mattresses don´t do.