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Original poster

Anyone have experience with Sagittal craniosynostosis?

33 replies

Nat09876 · 19/02/2022 13:32

My health visitor noticed my babies head had gone from 25th to 91st centile at the 6 week check. She also said the shape looked elongated but thought the skull sutres were still open…scheduled another head measurement in 4 weeks. Now obviously I’ve been on doctor google and came across Sagittal craniosynostosis …I think due to growth spurt this also now looks more pronounced. I’ve had a feel myself and I’m sure the suture doesn’t feel open where it should but health visitor thought it was so I’m really hoping.

Does anyone have experience with this? I’ve attached a photo from the side also…

Anyone have experience with Sagittal craniosynostosis?
Anyone have experience with Sagittal craniosynostosis?
OP posts:
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AnyFucker · 19/02/2022 13:35

Baby needs a skull X-ray to check if the skull sutures have fused too early

Was he/she born prematurely ?

JustWonderingIfYou · 19/02/2022 13:41

What centile is her weight on?

Was it a vaginal delivery and her head was a bit squshed at first measurement? Only asking as my DSs head was measured as 3rd centile but it was just super coned and by a week was on 45th or something.

Original poster
Nat09876 · 19/02/2022 13:48

Her weight is 25th centile (from birth and now)

It was a vaginal delivery but she’s now 10 weeks so thought it would have evened out? She was prem, 2 days last due date so pretty much on time.

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Original poster
Nat09876 · 19/02/2022 13:49

Sorry meant to say she wasn’t premature!

OP posts:
AnyFucker · 19/02/2022 16:41

Ok, quite often prem babies who spend time on NICU can have a long thin head

Ask for a skull X-ray, if that is normal then the high chances are the head shape will normalise over the next couple of years

GeorgiePorge · 19/02/2022 16:52

my son has sagittal. he us 5 months old and now under care at Oxford cranio facial team.

His is a very classic presentation... long slim head...best view to see head shape is birds eye looking directly down.

can you feel a ridge along the top centre line of her head - if so is much more likely to be sagittal than just positional plagiocephaly.

we had an xray which showed fused sutures, but often xrays are not able to confirm either way and a CT scan is required. my DS still requires a CT to officially confirm diagnosis prior to surgery to correct.

we were seen by a paed consultant who referred us to the nearest specialist team.

It is quite rare and babies head can be is shaped for so many reasons it isn't something drs/health visitors would necessarily pick up on.

GeorgiePorge · 19/02/2022 17:02

you may find this helpful in looking at head shapes.

Anyone have experience with Sagittal craniosynostosis?
Original poster
Nat09876 · 19/02/2022 19:25

@GeorgiePorge I’m sorry to hear that you’re going through this with your son..thanks for the information. I know it’s easily corrected with surgery but obviously still quite worrying…this is a birds eye view. My gut says it doesn’t look right and also been comparing photos of my eldest daughter at this age. My husband actually has quite a slim head so I’m hoping it’s maybe just a variation of normal. Going to call the doctors on Monday and try and get a referral..health visitor is due back next week but just want to know sooner either way

OP posts:
Original poster
Nat09876 · 19/02/2022 19:26

Forgot the pic..

Anyone have experience with Sagittal craniosynostosis?
OP posts:
GeorgiePorge · 19/02/2022 20:19

@Nat09876 I'm in a stage of acceptance at the moment... but been a bit of an emotional ride and I know when the surgery gets closer I will be a mess again.

I was sick with worry when I first thought/realised there was something wrong - so I totally understand what you might be feeling now.

Yoir daughters head does look long and slim.. but as you said that could just be her head shape... Trust your gut and push for a referral. There is an excellent charity called Headlines which could help you if your gp isn't playing ball, and/or give support and info. There are some good fb groups as which have really helped me get to grips with what we have ahead of us.

If you do have any questions please feel free to PM me.

Good luck with it all I hope you have some answers soon.

Kd1403 · 15/08/2022 21:00

Does anyone know if this looks like sagittal craniosynostosis? It was picked up on by the health visitor at 2 weeks old (head 99.6th centile since birth and very small fontanelle), but GPs say it's nothing. I've demanded to see a pediatrician and have an appointment on Thursday, but looking to see if anyone with any experience of craniosynostosis knows if this looks like it? He is now 8 weeks old.

GeorgiePorge · 16/08/2022 12:45

there are definitely similarities in head shape to my saggital boy at that age.
you are absolutely right to get a paed referral and if they suspect cranio, they in turn should refer you to a supra center for official diagnosis.

one clear indication of sagittal is whether you can feel a bony ridge down the centre of the skull.

There is a fb group called Cranio ribbons UK parents support... if you join and post your message there you should get a few good opinions. Also headlines charity are great with advice

Kd1403 · 16/08/2022 17:35

Thanks so much for responding!

It definitely feels like there's a raised bony ridge down the centre, front to back. I've done a lot of research and I know that it looks very like it, but the GPs are making me feel as though I'm just paranoid - the last one said that the "bony ridge" is just the suture.

I'll have a look at the fb group in the mean time, and hopefully Thursday gives me some answers.

Thanks again ❤

GeorgiePorge · 16/08/2022 20:25

it is possible that your a feeling an over lapping suture and the gp is being dismissive thinking its that. It is very common for GPs to miss it however so please don't let them make you feel paranoid.

Best of luck on thurs...if they are xoncerned they are likely to refer you for xray or CT so it may be a while before you know anything for sure. I remember it being a tough time those early weeks while you are waiting for news and my best advice is just to enjoy your gorgeous new baby and try to put it to the back of your mind as much as possible. x

Kd1403 · 18/08/2022 13:07

Just to update, the pediatrician agreed with my concerns about shape and ridge and we have been referred to a specialist center. It's a relief that we're now on the right track! X

GeorgiePorge · 18/08/2022 14:33

glad to jear you got a referral. You will definitely be under the care of the right people now. Good luck with it all. xx

LE87 · 04/09/2022 22:43

Hello, have you got any further with your referral? My daughter was just diagnosed on the 10th august and is being seen by the specialist in 2 weeks. Her shape looks very similar to your sons.

Lola1996 · 07/12/2022 06:14

Hi I know this is an older post, but looking some advice about my 4 month old. Health visitor feels baby’s head is a little strange at the back and soft spot is small. Do you think this could be Craino?

he looks perfect from the front but head does bulge at the back a little.

Anyone have experience with Sagittal craniosynostosis?
LE87 · 07/12/2022 09:48

Have you got a side pic? My daughter’s is much more visible when you look at her side profile

Lola1996 · 07/12/2022 09:59

This is from the side!

Anyone have experience with Sagittal craniosynostosis?
Anyone have experience with Sagittal craniosynostosis?
LE87 · 07/12/2022 17:19

So I am obviously not a doctor but having seen a few babies with it now, it does look like it at the back. Does he have a ridge at the top of his head? Contact your GP and ask the Headlines charity for advice

Lola1996 · 07/12/2022 21:26

Thank-you for your advice!! Wasn’t sure if I was going crazy or not lol

GeorgiePorge · 08/12/2022 06:50

just to second the PP- can you feel a central ridge going down the length of the skull?
my boy had saggital , corrected now, but what made the paediatrician take notice was the ridge.

has the shape got more prominent over time?
Earlier up in the thread I have posted something of bird's-eye view of heas shapes which mat help if talking to your gp for a referral.

Onebrokentoe · 08/12/2022 07:02

Lola1996 · 07/12/2022 06:14

Hi I know this is an older post, but looking some advice about my 4 month old. Health visitor feels baby’s head is a little strange at the back and soft spot is small. Do you think this could be Craino?

he looks perfect from the front but head does bulge at the back a little.

My ds was saggital so I have no experience with coronal but your ds definitely needs a review. Going by the pics earlier in this thread he’s textbook bilateral coronal. All the best op.

Lola1996 · 08/12/2022 09:09

Thanks everyone. No I don’t think I can feel a ridge??( not an obvious one anyway) Also his head is normal like 50/75th centile so not overly big X

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