To ask if anyone has experience with - Sagittal Synostosis/Craniosynostosis

[Tiggytigert]

Bit of back story -

My daughter is 7 months - she has always had a huge head, like, 90-98th centile big.

Also, always been a funny, bumpy shape.

Im anxious from searching after seeing recent pic - attached (I have others of birds eye view also) - that she has something, maybe more sinister with her head shape due to this.

Please note, that's not a big bump on her head, that is just her head shape! She also has slight bumps above her ears, misaligned ears, a slighty flat edge to the left top side of her head also.

Has anyone got any experience, seen anything like this, words of wisdom or help put my mind at ease? Literally, anything. I'm so worried about it and feel awful I left it this long if it is something to be worried svout and needs surgery!

She is hitting all development milestones for her age, some for 9 months, she is also 90-95th centile for her weight and 75-80th for length.

Picture from above?

I wouldn't have noticed anything wrong from this first photo to be honest. All three of mine have had kind of bumpy heads and all fine. Looking back my second child seemed to be short and I was really worried for quite a while that there was a problem, (spoke to HV etc) but now I realise I was completely mistaken and in my case I suspect it was sleep deprivation and stress 😐. Hope you get some more helpful answers ❤️

@nocoolnamesleft not best but!

@willowtree81 - My partner said the exact same and said it looked relatively normal. She has a lumpy bumpy head, not flat as such but definitely not perfectly formed! I'm also unsure if I notice more as she's so fair. HV aren't doing checks and docs not face to face but HV just said if she's in proportion not to worry, but, from what I've read online if it's the above it could be dangerous 😅

I have cranio.

I’m 30. Ask anything if you need to. (:

Her head doesn't look particularly big to me.

Hey @bodgedboxdye, thanks so much for the reply! Please don't answer anything if its too personal! Am I correct in thinking you needed surgery for yours? Do you also mind me asking if you have any of these similar features? Or any problems from it?

From what I've read online she doesn't quite fit any of them, so I'm rather confused!

@JaJaDingDong thank you, maybe it's just me who looks too much into it! I'm glad to think others do not think the same as me

It looks normal. I’ve seen a lot. Certainly not enough frontal bossing to suggest saggital suture craniosynostosis. It certainly doesn’t look cosmetically abnormal enough to consider surgery. Cranial vault remoulding is for cosmetic reasons in this scenario. Would you consider her head shape cosmetically that weird that you’d operate? Once she grows hair you won’t notice any bumps at all.

@Tiggytigert I didn’t get the surgery, my mom said she didn’t want it for me. I was a baby when it was diagnosed, I’m not sure on the age though.

Yes, I have quite a few of the features associated with cranio, but there’s so many variations of it. Some worse than others.

I have the plagiocephaly type. It means that the right side of my head stopped growing whilst the left carried on. It also changed by eye shape too.

It was a lot more noticeable when I was a baby and a young child. (:

@Tiggytigert it doesn’t look like cranio to me. (:

Looks pretty normal to me
I've been worrying about DDs head in lockdown too! Its tough when you can't just check something with someone. I had a consult with GP where I sent photos. He said it was perfectly nornal. Could you call GP ot HV and do that? Either video or where you share pics?

Yes, my eldest son was born with Sagittal Synostosis. I'd raised the issue with more than one doctor after a couple of days and all were quite dismissive, babies heads come in all shapes and sizes (which I know they do) so I tried to believe them. The thing is he is a twin and the difference is head shape between him and his sister was as clear as day and night.
Over the next month or two it was steadily getting worse, increasing in size at the front and whilst the back was not.
To cut a long story short I kicked up a real fuss, was referred and eventually he had surgery when he was six months old at Alder Hey Hospital.
(Mr Paul May and his wonderful team carried out the surgery, people to whom I am forever in their debt)

I would suggest making contact with the Craniofacial Support Group, Headlines.
www.headlines.org.uk/index.asp

They are a wealth of information, guidance and support provided by others in a similar position. At the very least they could give you guidance on where to go for a diagnosis which is something I would urge you to do.

I think my husband has this. He never had surgery or even a diagnosis but his head is very big and long/narrow. He’s never been able to find a hat that fits and I even tried a website for people with big heads. He can never do anything that requires a helmet to be worn. He has never had any physical health problems as result of it but he was bullied relentlessly about it at school.

My son has sagittal and I’d say the first photo looks fine, no bossing of the forehead, however the second photo does look a bit more characteristic of the sagittal head shape, so it’s difficult to know which is the most accurate. A large head alone probably isn’t a worry, especially given she’s high on the other centiles as well, she’s probably just a big baby, but I’d be getting the shape checked, personally.

My DS was also born with saggital synostosis, it is quite rare so not that easy to recognise but fortunately the Junior Doctor who examined him after birth recognised the condition. DS has surgery at GOSH at six months and now has a normal sized head. Like kaMeloo we had great support from the Headlines charity and I suggest you contact them for advice.

PS My DS is now 19 and there have been absolutely no other side effects.

My dh has sagittal craniodynostosis and ds2 has a different form. Both have quite strange skulls (full of lumps, bumps and ridges) but luckily hair covers the lot and you cant tell.

With ds2 we went through the whole diagnostic procedure and assessment bw 6 weeks and 6 months, at which point it was decided that he didnt need surgery and we were discharged. It was very noticeable then, less so by 18 months. By 2 years you couldn't tell unless you put your hands on his head and felt around.

Where are you in the medical pathway? Has she had a ct scan yet? Headkinescare excellent and, if you are required to go down the surgical route there are 4 centres of excellence to choose from (Oxford, London, Birmingham, Liverpool) or your regional hospital may offer it.

I know it's a scary time but hang in there. The reity is this is highly treatable if treatment is needed.

Headlines are excellent

@notbadconsidering - thank you, no certainly wouldn't be doing cosmetically! Only if she needed it to help development and to stop pressure etc. The second pic isn't the best so I'm uploading a bette rone I snapped this morning!

@bodgedboxdye thank you so much I think I'll get it checked but for the minute I'm a little less worried!

@Thisisnotataste I spoke to our HV but this was before the picture! And I forgot to mention the sides of her forehead. She said she just has a big head and not to worry as she's generally a big girl 21lbs at 7 months and asked if the soft spot was closing properly which I assumed?? It was! Think I'll get an appointment via video for the doc tomorrow if possible, just to put my mind as ease! Lockdown is making us all so anxious about so many things!

@kaMeloo Ah thank you! Ill definitely look into them, glad you got it sorted! Mothers intuition aye!

@Probablygreen I've uploaded a better second picture! Her head isnt thinner at the back than the front like it is with sagittal but definitely is longer than most, I think I'll definitely give the docs a call tomorrow and see!

@ragwort ah, I'm glad to hear you DS is okay, do you think these look similar to him?

@Porcupineinwaiting the furthest I've got is speaking to our HV on the phone who wasn't concerned at all and just said it must be a big head but I forgot to mention the sides of her forehead (which stick out but not her whole forehead) basically everything I read is similar but not exactly her which is confusing me more as she doesn't fit any of the criteria as such! Think I'll give doc a call and ask if they can refer us for peace of mind. Thank you!

@Tiggytigert My partner was born with craniosyntosis. His baby photos show his head was an abnormal shape, he was also born premature at 34 weeks I think and they think cause was probably because of the craniosyntosis. He had surgery at 18mths, his eye shape is slightly slanted and has to wear glasses.

Speak to your HV or GP if you have any concerns just to be on safe side. But if it does show she does have it try not to worry too much. My partner is totally fine he works as a special needs teacher and you only notice the change of eye shape when he’s really tired and takes his glasses off. He’s also a kids football coach so although he has a slight beer belly (from his love of beer and takeaways lol) he is physically fit.

The third pic doesn’t look like cranio. I wouldn’t worry if I were you, I’d say it looks pretty normal 😊

@alphabetti which type was he born with? Does he have any other features? I was born with a webbed toe on the effected side.

It's hard to tell from the photo, my DS's head was quite 'pointed' at one end. It was a hard decision to make regarding the operation as it was really just for cosmetic reasons, there was no suggestion that his development was effected in any way or that he was in discomfort.

However his head shape was quite disfigured and that was why we decided to go ahead with the operation, it is very major surgery (don't google it) but we believe we made the right decision at the time and the care and support from GOSH was very good.

Thank you @alphabetti! Really appreciate your answer!

@Ragwort ah okay! Thank you! I spoke to the charity headline and send some photos and they also agree they do not think it's craniosynostosis and a normal head shape so hopefully no surgery needed here as she's just a bit bumpy!