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

153 replies

torgrosset · 16/11/2005 15:49

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.

OP posts:
Are your children’s vaccines up to date?
izzybiz · 15/01/2006 20:01

my dd who is now 20 months has this too. when she was born she had loads of hair which grew really quickly, then some family members were mentioning that the back of her head looked flat, i thought it was the way her hair was growing.
when she was sat in the bath with wet hair we noticed that not only was it flattened it was misshapen/lopsided almost. i spoke to HV who told me it would correct itself. wll it hasnt, its not as flat but still lopsided.
only when she was 16months did i see an article on this in TAB, and looked up the website, now my 5 month old nephew has this too.
i totally support you and your cause! well done maybe sometimes we need to shout, dont be sorry.

PeachyClair · 15/01/2006 20:35

My nephew has this, quite badly although slightly better (2 next week). He was a premmie and in an incubator (hard surface) for 4 weeks, then Sis had PND and I think did put him down a lot. Not her fault tho, goodness she went through enough poor lass!

He's on a 'wait and see' basis with Paeds, but they're considering private as it is noticeable.

going4potty · 15/01/2006 20:58

Hi Torgot, just wanted to express my surprise that people have only recently become aware of this problem. As part of indian/ east african culture, when a child is born we shape a long sausage shape from a sarong and rest babies head in it, so head is slightly raised. Obviously only when they are in sight. I did it with my ds, mum did it for me etc etc. Well done for making people more aware

Meanoldmummy · 15/01/2006 21:41

I had NO IDEA about this. Well done for posting it!!

CheekymonkeysGreatestHits · 15/01/2006 21:53

My DS has this and he has seen a Paed who said it should right itself by the time he was 2. He's now 10m and it is a lot better than 2 months ago. He told me about these companies and advised me to avoid them like the plague. I know it's only his opinion but it sounds horrid to me.
I can however sympathise with the worry this causes and each to their own but I would never subject my son to the extreme of putting him in a helmet for 23hrs a day.

torgrosset · 16/01/2006 08:53

message to cheekymonkeygreatesthits - I don't want to start an argument & everybody is entitled to their own opinion. I agree it is very horrible having to put a baby in a helmet for 23 hours a day - I'm having to do it & it wasn't my choice. I think it really does depend upon the severity of the plagiocephaly & the circumstances that surround it.

My dd has plagiocephaly & a curved back due to cramped conditions in utero. My paed said that her head wont improve unless back is treated & vice versa. The treatment for her head? A helmet.

We were referred to a specialist craniofacial neurosurgeon at Leeds Hospital (Mr Chumas) who is one of the top paediatric ones in UK apparently & he has made & fitted a helmet for my DD on NHS. He obviously thinks that helmet treatment works otherwise he wouldn't be making them, would he?

Also I think if the NHS (in general) gave new parents more information about how to prevent plagiocephaly then there would be less of a need to put babies in helmets in the first place. They give you information about back sleeping to prevent SIDS but nothing with regards to preventing plagiocephaly - which is a "side effect" of back sleeping. Yes, I agree that the number of SIDS has dropped, byt also the number of cases of plagiocephaly has significantly risen since the launch of the back sleeping campaign. Most cases of plagiocephaly are caused due to the baby laying on their backs in the same position for long periods of time. Car seats & baby gyms on the floor in particular are two sources of the cause. there is a national petition to get the NHS to become more aware of plagiocephaly & to give out simple advice & information on how to prevent it in the first place. Please sign the petition by using the following link: |link{http://www.ipetitions.com/campaigns/plagiocephaly/\petition}

However, it is not always the case that back sleeping & prolonged periods on their back is the cause of the plagiocephaly, my DD is one classic example & her plagiocephaly could not have been prevented. Therefore stopping all helmet treatment entirely would not be possible.

Thanks for reading & I hope you can see another point of view.

OP posts:
torgrosset · 16/01/2006 08:55

sorry the link for the petition didn't work. It is:
petition

OP posts:
torgrosset · 16/01/2006 20:53

.

OP posts:
Nixz · 16/01/2006 21:35

I have skimmed this thread and although i was aware of babies who have flat sides to their heads etc i did not think it was or could be caused by anything other than genes etc, im quite shocked!
I was just wondering, where do we put our babies if they are not in car seats, prams, laying on their backs etc etc? My hv told me when dd was born (5 years ago) that babies should spend most of their time laying flat on their backs as it was bad for their spines if they didnt.
Dont get me wrong, i loved the cuddles/slings etc etc but ggglimpopo commented on how easily babies are in the situation where they are resting on hard surfaces for quite a while.

SophR · 13/07/2007 10:06

bump.

hana · 13/07/2007 10:14

babies do spend too long in this 'day and age' either in carseats, in bouncy chairs, on a playmat lying down - generally lying flat on their back which isn't good. they do need tummy time, or time being held, or time in different positions. it's convenient for many parents to use these products, to put their baby out of the way, but not at the expense of never being on tummies. yes, lots of babies cry and don't like it, but start slowing, a minute here and there and work up

SophR · 13/07/2007 10:19

I was actively searching for info on this - a friend was saying that her children have flat patch at back of their heads, while her sister's children didn't (her sister's children are older, and born in time when advice was to sleep on side) - and I'm very self-conscious about my own flat head (seriously!). Before anyone shoots me down in flames, I'm not going against the sleeping on back advice, but there are apparently other things that you can do to help. See this link from UCL/Great Ormond Street for more info: www.ich.ucl.ac.uk/factsheets/families/F040171/index.html

And as this is only my 2nd post on Mumsnet, hope I've not broken any protocols ...

Quiddaitch · 13/07/2007 10:24

my dd hated tummy time until we went to a cranio-sacral therapist. one trip, she slept for hours on the way homw and loved tummy time from that evening onwards. she didn't have any obvious difficulties but the CS chiro said her neck was a bit tight and loosened it off.
dd was in a hammock as well, which i personally feel was good for her head as it supported her in the round rather than flat.
welcome to MN, torgrosset.

Quiddaitch · 13/07/2007 10:26

also, when i was born the midwives recommended turning babies every sleep so that they didn't get flat heads.

no protocols broken, SophR. also welcome.

GroaningGameGirly · 13/07/2007 10:29

If it's any comfort to those of you with babies with plagiocephaly ... my DD1 also had plagiocephaly. This was a long time ago and helmets were not an option, we were simply told she would grow out of it, and I'm pleased to say she's now a happy, healthy, completely normal-looking (in fact, rather beautiful 12 year old. Raising awareness is one thing, but please don't frighten people too much - new parents have enough to worry about!

SophR · 13/07/2007 10:31

Thanks for the welcome, Quiddaich!

SophR · 13/07/2007 10:38

Glad to hear your news re beautiful DD1, GGG - I think it is particularly because I am self-conscious about my own head being slightly odd shape that I was worried about this. And as an about to be parent, I'm hoping not to cause any problem for my own LO. Having said that, I can hardly say that being self-conscious about slightly odd head shape has affected my own life particularly! Just when I am trying to put hair up...

ronshar · 13/07/2007 10:42

Just to throw a spanner in here. Has any body heard the latest research with regards spine/hip problems due to car seats and the three in one travel systems. Which I personally think are the devils spawn!
Please dont anybody shout it is just a humble opinion..

SophR · 13/07/2007 10:45

Hi Ronshar - do you have links to said research?? I've not heard anything on this.

ggglimpopo · 13/07/2007 10:49

There was an article on this (3 in one travel systems/car seat usage) a couple of years ago. Try google?

ggglimpopo · 13/07/2007 10:49

sorry - should have added, in one of the midwifery journals

ronshar · 13/07/2007 10:51

Not without trying to find it again.
It was about 18 months ago. It was either in Times health or Oesteopath stuff. I shall try aver the weekend to dig it up for you.
Are you expecting? When, if you dont mind me asking?

ronshar · 13/07/2007 10:52

Thank you. I was worried in case I had made it up to justify my dislike.

SophR · 13/07/2007 10:57

I'm due mid Aug... and haven't bought a buggy at all yet! Wouldn't get travel system anyway as v limited space in our flat, and also likely to use public transport for which travel system not v useful... Have sling at present, hope to get away with that for a while, depending on back! And guess it will be helpful for LO to be carried around close to me anyway. Not sure of implications re LO's spine, but guess better for head (plagiocephaly) - but not likely to use sling for any long journeys.

ronshar · 13/07/2007 11:00

The slings are great for all kinds of reasons. I think the hammock/across the body are the best with regards posture and your back etc.
I used the baby bjonn? it was a while ago not sure of spelling and it was fab!
Good luck to you for you first baby. They are a source of great pleasure and great pain.