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baby with misshapen head - does it really get better by itself?

(71 Posts)
Willow33 Sat 25-Jul-15 23:19:19

Would love to hear from other parents. DD who is 10 weeks old has torticollis and so looks to her right most of the time. So head is misshaped due to this. Dr said it will sort itself out by doing tummy time. However my search of forums says people can expect to shell out up to £2k for special orthotics helmet! shock
This is because they are not available on the NHS but still recommended by many parents. Many people say to ignore drs advice if they suggest 'wait it out'.

Samcro Sat 25-Jul-15 23:25:51

i have no real advice as not gone through this, I can only imagine it is very scarey.
hope you get some advice x

TheForger Sat 25-Jul-15 23:30:11

DS had a misshapen head, flat at the back and one side. It looked lopsided if you looked at it from above. We saw a paediatrician about it, he said it would sort itself out as he grew and it has.

We thought about a helmet but the paediatrician said it would sort itself out naturally so we followed his advice and wasn't complimentary about them. The clinics blurb always show before and after pictures, would the child's head have done that naturally anyway? I wonder if there have been any trials with a control group?

TheFirstOfHerName Sat 25-Jul-15 23:31:53

DS3 had quite significant plagiocephaly due to his position in utero (smaller twin). It improved significantly by 6 months and by the time he was 2, you couldn't notice it unless you knew what you were looking for.

He is now 11, and the only long-term consequence we have noticed is the alignment of the teeth in his lower jaw. He will definitely need orthodontics in a year or two.

TheForger Sat 25-Jul-15 23:40:15

Ooh DS was the smaller twin, apparently his sister was sat on his head in uterine.

OP I know it Is worrying, we saw the doctor and asked for a referral to a paediatrician for reassurance. Like TheFirst you can only see it if you know what to look for.

gallicgirl Sat 25-Jul-15 23:45:11

I know a 4 year old who still has a misshapen head so I guess it doesn't always sort itself out.
Maybe consult a paediatric osteopath who will be able to help with the torticollis too.

Willow33 Sun 26-Jul-15 00:40:43

Thanks. garlic girl - is the paediatric osteopath available on the NHS?

nooka Sun 26-Jul-15 01:06:16

My ds had a bit of a triangle shaped head due to being squished in utero by my bicornate uterus. It took a long time to resolve but he had very curly hair as a toddler/little boy so it wasn't too noticeable except after a bath. He's 15 now and I don't know if his head is perfect or not but he's good looking enough.

I would have thought resolution probably depends on the reason for and the degree of head 'wonkiness'.

Maryz Sun 26-Jul-15 01:20:48

ds2 was born with scaphocephaly. His fontanelle was pretty much closed. The hospital didn't diagnose it, and it was only when he was two that he was spotted and assessed.

We were told that had he been diagnosed as a baby he would have been operated on - his disfigurement was, apparently, quite severe. But by the time he was diagnosed it was too late.

He had/has a weird shaped head. He was called "rugby head" at school. The medics followed him for a while thinking that his skull wouldn't normalise and he might be brain damaged.

But he's fine. His head has rounded out (even though we were told it never would). He still has an exra layer of bone on his skull, and his eyes look a bit wideset (sort of on the side of his head). The hospital have followed him as an example of what happens if you don't operate, and some specialists are coming to the conclusion that the US system of aggressive treatment (skull reconstruction and helmet wearing) might be unnecessary.

If your dd is affected badly enough they will treat her; if they say wait, I would wait. Many children are born with odd shaped skulls and are fine.

HeartsTrumpDiamonds Sun 26-Jul-15 01:32:26

First of all I apologise for not knowing any of the medical terminology...

Anyways DD1 was born with a fairly severely misshapen head due to her head being caught up under my ribcage practically the whole pregnancy. I ended up with a c-section because of it so no squeezing through the vaginal canal to help reshape her skull etc. The back of her head was so pointy that she couldn't lie on her back face-up. I took her to a cranial osteopath but honestly I don't think it helped, I think it would have corrected on its own. After 6-12 months you couldn't tell and now that she is 11 you definitely can't - although when I run my fingers through her hair or help her wash it I can still feel the ridge across the back of her head.

So totally anecdotally the "wait it out" approach worked here.

(Hi Maryz, I promise you I am not stalking you across the boards tonight grin )

gallicgirl Sun 26-Jul-15 02:19:33

Hi willow.
I have no idea if the nhs will pay for an osteopath or not but they are recognised as a valid alternative treatment by nhs so worth asking. I pay around £40 a session for me.

uppereastsidemom Sun 26-Jul-15 03:37:10

Following with interest - DD2 has a definitely flat head and a preference for looking to her left, to the extent that I'm mostly pumping rather than breastfeeding from my right boob as her latch appears uncomfortable for her on this side (grin). She saw a paediatrician yesterday who was very relaxed about it, and just suggested ensuring toys and thing are placed to her right to encourage her gaze that way. So I'm not too worried yet. DD is 11 weeks.

ThumbWitchesAbroad Sun 26-Jul-15 03:52:29

Osteopaths aren't usually available on the NHS, no, but some are covered by private health plans if you have one.

Not all misshapen head issues will resolve themselves, but it sounds like your baby's problems are due to her torticollis, so probably will - but I would get her seen by a cranial osteo to help. After DS1 was born, his R arm kept tucking up so his hand was by his mouth the whole time - I'd try to straighten it out, but he'd cry - 2 session with a cranial osteopath and she'd fixed that. He'd probably been like it since 20w in utero, as that's where his hand was at his 20w scan! grin

I have a friend whose baby's misshapen head definitely wasn't a "resolve it by itself" one - he had to have surgery because some of his cranial sutures fused too soon, and his head started to get pointy - so they had to open his skull up on the top, front to back, and put springs in to push it apart, and to allow extra bone to grow in the space or his brain would have been squeezed by the constriction. The operation was very successful and he's fine now, but he wouldn't have been without it. The condition is called craniosynostosis, but it doesn't sound like your baby has anything like that.

backtowork2015 Sun 26-Jul-15 20:26:57

this is exactly what happened to my ds. he had torticollis abd developed a very severe plagiocephaly around 8 wks old. it caused some facial asymmetry as the flattening at the back of the skull caused the forehead to bulge and his eye to bulge. he was referred urgently for physio for the torticollis which we carried out religiously. as soon as he was diagnosed we never let him rest on that side afain. he was carried in a sling, in the cot we rolled a towel up and propped it up against his preferred side to stop his head turning that way. had to reposition him several times a night. we never left him in a car seat if we weren't driving and when we were we rolled a muslin up and propped his head facing foreword. the physio worked and the torticollis resolved. He's 18m now, there's a mild flattening still but his facial asymmetry resolved. he has opthalmic follow up still as the assymetry caused a squint temporarily but that's also resolved recently. we did see a private consultant on great portland st to discuss helmeting.... not one of these private clinics who just want to scare you out of your money. ...he's a paediatric cranio facial surgeon, I can give you his name if you'd like, he was lovely. he said we had done the job of a helmet by simply not allowing any further pressure to thr flattened area whilst treating the cause... the torticollis. the nhs do not take this seriously. I hope you are getting physio for the torticollis, that's the most important thing.

Brambles35 Sun 26-Jul-15 20:32:47

My son was similar, problems with his neck so only looked/lay with his head to one side. Resulted in plagio and braccy. Went to numerous drs/HV and even a pead whom all said it would correct itself. I did my own research and decided to go private for helmet therapy after noticing that one of my sons eyes was becoming bigger than the other, his forehead was starting to misshapen and his ears becoming misaligned (all common associated problems). My son now has a perfectly symmetrical designer head!! Lol.

In my NCT group there were two other little ones with similar problems but decided not to do anything as were told it would correct itself. (One was a twin) they are 20 months now and one has a bulging forehead and very noticeable misshapen head, the other is less noticeable but the problem is clearly still there (maybe I notice it more??)

There are a few plagio FG support groups (mainly american as helmet therapy is quite the norm there.) But one thing I noticed was the amount of people joining asking about helmets for their 8m + children because it hadn't corrected itself like they were told. Unfortunately it's too late then.

It is possible to get on the NHS (there were a few in the FB group) and I was told by the pead that my son would have been able to have it on the NHS but with the waiting list etc it would have been too late.

I don't regret it in the slightest especially when I see littles with wonky heads. Medical people tell you that it corrects itself mainly because it's not readily available on the NHS.

If anyone wants to PM me about having a helmet them please do, haply to answer any questions :-)

SolemnStollen Sun 26-Jul-15 20:37:10

Our DD had/had this - her head was quite misshapen (and face, though weirdly this was only massively noticeable in the mirror!) so we were referred for physio at around 12weeks, this was very simple & was just playing more on the unflavoured side, turning her head while pressing down the opposite shoulder at each nappy change, & using sling & lots of tummy time. Now at 6m it's not really noticeable & in fact she always sleeps on the opposite side from before now! So don't worry, I think it does usually resolve itself smile

IcecreamHavoc Sun 26-Jul-15 20:41:25

It can sort itself out but not always.

My child had undiagnosed torticollis, ignorant GP, finally went privately and got DC the helmet. Improvement was massive and much more than the doctor expected. Did cost us about £2000 but worth it. Never wanted to have regrets. DC has other difficulties, all missed by the GP, has had to go privately and has costs us ££££££ but DC is more than amazing and we did the right thing. It would NEVER have righted itself.

castlesintheair Sun 26-Jul-15 20:45:26

DS still has a flat head aged 13. We too were told it would fill it on its own. It obviously didn't. However it's not obvious unless his hair is wet. No one has ever commented on it. He has never suffered for it. His brain is fine.

TheFirstOfHerName, I know it sounds a bit koo koo but he did start seeing a cranial osteopath aged about 7 and amongst other things she managed to sort out the alignment of his jaw (which I wasn't aware of at that time as being a problem). We've been told he doesn't need any orthodontic treatment which is pretty amazing today - my other 2 with perfect round heads will need it. I think you can take your DC at any age.

Username359185 Sun 26-Jul-15 20:54:56

DS had this and we were told to encourage him to turn his head in the opposite direction at every opportunity. So we put interesting toys to his left, turned his head to the left while he slept and supported it in that position, held him in such a way that he had to turn to the left for feeds - that sort of thing. It did work and he's symmetrical now, but it wasn't a case of 'wait and see', we actively dealt with it.

Pantone363 Sun 26-Jul-15 21:06:57

DD had this, always turned her head so it was resting on the same spot. Physio was useless. We paid for 3 sessions with an osteopath (he specialised in babies). Within 3 sessions her neck was sorted and her head perfectly round!

At home we made sure she didn't rest it on that spot for long, propped her up, used a bumbo and sling to keep the pressure off.

It's very common these days with the back to sleep campaign and high use of baby chairs/car seats etc.

Some of the kids in our school have obviously misshapen heads and faces.

backtowork2015 Sun 26-Jul-15 21:38:30

apologies if this sounds hijacking, if your dc had torticollis can I ask what you think caused it? my ds was born by forceps (?neck trauma) and was 9lb15oz and I am slim size 8 usual weight 8st 11lb (?cramped in utero). he was an easy and contented baby (lay down for long periods). which caused it? or was it a combination?

Kirsty40 Sun 26-Jul-15 22:59:16

I would definitely recommend you see a pediatric osteopath. I took my son when he was the same age as your daughter and had started only looking to his right side. He only had two appointments, and he was easily able to look either left or right.

Willow33 Sun 26-Jul-15 23:28:08

Ok so lots to do.
backtowork2015 - I am not sure what caused it. It could be that she was big for me and squashed in one position inside me. I had gestational diabetes.
She was born by elective c section at 38 weeks weighing 7lb 6oz. Consultant thought she was getting big for me.
Which exercises did you do? Thanks

TheFirstOfHerName Mon 27-Jul-15 08:51:02

We did take DS3 to a cranial osteopath for an assessment and a course of treatment when he was tiny. Without that, his jaw and dental alignment would possibly be worse, although obviously I have no way of knowing as we didn't have a control DS3 to compare with.

NotATest Mon 27-Jul-15 10:54:23

OP, when you say torticollis, do you mean that she is physically incapable of fully turning her head to the left herself? Or is she more comfortable turning to the right, but is still capable of fully turning to the left as well?

Either way, I'd avoid the 'wait and see with a bit of tummy time' approach, as time is of the essence when it comes to plagiocephaly.

If it's the former (can't fully turn head), I'd push for physio or get physio privately, as I understand it can worsen in time as the muscles on one side strengthen and those on the other side weaken.

If it's the latter (can fully turn head but prefers not to - this was the case for my preemie DD), then you may not need physio, but you need to go all out with the repositioning. Be religious with it - you'll be doing it for months. You've already been given its of good advice on this. Move her head to the less preferred side whenever you can. We used to put interesting toys and lights on the less-preferred side and block off the view on the preferred side. When putting her into her cot asleep, we'd tilt her at the hips so that her head would fall to the less preferred side without waking her. Tummy time, sling time, time on you are all great (as long as the head is facing the less preferred way!).

I can't advise on the helmet, as we didn't feel DD needed one, as it had pretty much resolved by about 4 months corrected. A friend of mine's DS had undiagnosed torticollis and ended up with quite a misshapen head. They went the helmet route. At 2yo (post helmet) his head was still quite asymmetrical but by 4yo it looked completely symmetrical.

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