Could a misshapen skull cause development delays?

[edwardcullensotherwoman]

DS (DC4) turned 3 this week. Since he was born he has had a misshapen head. Had a wonderful HV then who noticed it but said she didn't think it was an issue, all other checks were always ok, just a funny shaped head. The back of his head is a lot more pronounced, almost cone shaped. I now wonder if it could be having an effect on his brain and therefore his development.

His speech is not very clear, he seems to be missing/struggling with a few sounds, but can use short sentences and generally articulate what he wants. Understands questions about what things are or his opinion on things and basic commands. He knows most colours and basic shapes, can count to 11 but circles back to 8 because he says "seven" and "eleven" in the same way

He didn't walk until a few days before he turns 2. Was a super fast crawler, crawled at about 7 months. He is still very unsteady, and seems to swing his legs as he walks, IYSWIM, so his foot doesn't always land in front of him, but in front of the opposite leg, or further out to the side than it should and his arms flail everywhere!

He can hold a pencil in the correct way, but can't do more than scribble, not even draw shapes.

HV (who tbh is not wonderful and have heard many accounts of he being dismissive of children with quite obvious issues) says he's fine, a bit behind but he'll catch up. But the longer we go on, the more concerned I am.
Would you contact GP about this, or will I be laughed out of the surgery??

I don't have any experience to offer but does he go to nursery? Have they said anything about his development from their point of view?

I would speak with your GP, if only to have them confirm all is well

I don't think on it's own it would cause developmental delays, however it could point to a (potentially rare) genetic condition. I've known a couple of times where I've looked at a baby and thought their face/head looked not quite right and it's turned out they have a genetic condition.

It is most likely that it isn't connected, but have a chat to your GP about it.

Despite what your HV says if he is delayed then it is better to have things in motion sooner rather than later. If he grows out of it, that's great and the early help won't effect him. If he doesn't grow out of it, then early intervention will make a huge difference.

A misshapen skull won't cause development delays but it may be linked to them (underlying genetic condition). Are his hands and feet normal?

I'd see the GP and ask for his fine and gross motor movements and his speech to be checked because you're concerned.

I would see your GP and describe your concerns - make a list of all the things that you have noticed and explain exactly what you are seeing - take a list with you. You may then get referred to a paediatrician for a proper assessment or the GP may say he's fine . Better to get checked and be proved wrong than leave it and have your fears confirmed later.

Can he move his neck okay? He may have plagiocephaly.

I would get him seen by a GP if only to put your mind at rest. Most of what you've described sounds very normal though, the only thing that stands out for me is being unsteady with his walking.

Please take him to the GP and ask to be referred to a craniofacial team at your closest hospital and don’t take no for an answer. It may be nothing, but there is very poor awareness of craniosynostosis even with paediatric specialists, despite being much more common than you would imagine, so you want him to be seen by specialists who deal with these things day in, day out to get a proper diagnosis. One or more of the sutures of his skull may have fused prematurely causing the shape you’re noticing. There are some very rare syndromes which cause this, but in the majority of cases it’s just one suture and there’s no known reason. He really needs to be under a specialist though so they can keep an eye on him and ensure that he gets any checks needed to make sure it doesn’t cause further and more serious complications. I’m not writing this to scare you - I really, really just want you not to be dismissed by HV and GPs and risk problems for your DC further down the line.
My son was born with one of the rare craniofacial syndromes where multiple sutures had closed and which makes his face look a bit different. It was diagnosed at 12 weeks after being dismissed by Drs left, right and centre (including a general paediatric consultant who said “there’s been a suggestion that he has a craniofacial issue. I know what children like that look like, and it’s not him”). As a result of the condition my son had pressure build up between his brain and skull and required 2 operations to relieve it. After the 1st op at 18 months we couldn’t believe the jump in development, speech and temperament- it’s suggested that some of these children are born with a headache and therefore know no different until the pressure is released. Unfortunately for us, the pressure wasn’t detected and treated soon enough and had starved my son’s optic nerves of oxygen causing irreparable damage. He now has just 10% clarity of vision, nystagmus and colour blindness despite having been born fully sighted. We have spent endless hours in the corridors of GOSH over the past 6 years and the stories you hear about GPs and local hospitals missing diagnosing these things and making the appropriate referral is utterly terrifying.

Wow, thanks for the replies everyone  glad to see I'm not being over the top!
@SunshineCake yes he appears to have full movement in his neck and no apparent pain.

@mumslave a friend of mine's child has a rare condition that gives a person a certain "look" (for want of a better word). She mentioned the condition to a consultant who said exactly the same thing yours did! Thank you for your post, I have since looked into craniosynostosis and the sagittal type sounds remarkably similar to the shape of DS's skull.
He spends 2 mornings a week in a nursery, where the leader is a qualified speech therapist. I mentioned his speech issues when he started and she has been very supportive, but mentioned recently when I asked her that he is still behind the expected milestones and has an unusually high pitch
Thanks all, I'll get him to the GP asap. Last I heard the waiting list in my NHS Board was 18m-24m for a paediatric appointment

Hi. With what you are describing, I too would get this checked out.
My son was diagnosed with craniosynostosis, specifically sagittal synostosis which is a single fusion of the suture running from the forehead to the back of the head. He also presented with a ‘cone’ at the back of his head and also quite a pronounced forehead.
This was described to me as his brain having to find somewhere to grow. As his skull was very narrow (from left to right) due to it not being able to expand naturally in those directions as he grew, the brain was growing into places where there was no restriction- in his case this was where the sutures were unaffected and not fused. Hence the exaggerated features at the front and back of his head causing an overall elongated skull.
We were fortunate in that this was picked up within a few days of birth and although it took a few weeks to be confirmed via CT scans etc we were taken very seriously by our local hospital and BCH where his surgery took place at around 7 months old.
He remained an outpatient for a few years where general growth of his skull was monitored and speech etc was assessed, he was discharged fully around the age of 4 or 5.

He is now nearly 15 with no ill effects and I do consider ourselves really lucky that the registrar in the maternity ward spoke up about the shape of his head (the midwife who dismissed my concerns is another story 😡)
I also would not wish to worry you but don’t think that you can do any harm by getting him checked out.
If it is nothing then that is fantastic but a referral to a cranifacial team would be able to give you that peace of mind.

Thanks @Yourshoesarewhereyouleftthem, both you and @mumslave have helped in mentioning craniofacial, I'll ask about that rather than general paeds referral.
Just found this picture on google images (I know ) and it's almost identical to DS' face and head shape as a baby. Less noticeable now under masses of curls

Hi again. I have just started work so will be quick....
Those images resonate with me. So if your son has a similar shape then please have confidence in your instincts.
Good luck with the GP - do you have photos of him as a baby that might help if he now has a lovely head of hair, albeit they should still be able to measure and feel his head.
Best wishes.

Thanks @Yourshoesarewhereyouleftthem, seeing the GP later this week, and going to ask for a referral to craniofacial. I have photos from birth up to a year when he was practically bald, where you can see the head shape, and also that he never laid flat on his back with his head in a neutral position. In fact he would only settle if I put him on his side to sleep.

Just realised I very selfishly didn't respond to your story, so glad to hear your son is doing well now.

Same to @mumslave, sorry! So sorry to hear your little one has reduced vision as a result

That photo OP shows a baby with sagittal synostosis giving scaphocephaly (boat shaped skull) . There are 4 hospitals that treat craniosynostosis in the UK, Birmingham, Oxford, Liverpool and Great Ormond Street , if you search for craniofacialuk.com, there is a lot more info. Your GP can refer you directly to one of these units you don’t need to go via a paediatrician

Thanks @Rodders92, I wasn't aware there were only 4 centres! Good to know, as they're all quite far from us so I'm anticipating reluctance from GP in that regard. I'll have to put on my big girl pants

Edward, Headlines.org.uk is another very good website to look at. The NHS page on craniosynostosis has all the information about referral which can help to show your GP, good luck with the appointment

Looking at the photos that baby doesn't have plagiocephaly so I'm glad you have posters who are knowledgable about what it could be. Good luck.

My son (premature, a twin) has head a misshapen head since birth - really long at the back with a noticeable bump at the base.

I remember asking the HV at the time and she seemed to think it was normal and I left it. It sometimes played on my mind but I just thought it was because he was squashed by his brother in the womb.

When he was about a year old he had suspect meningitis and the triage doctor actually asked me about his head, despite it being totally unrelated. She urged me to speak to the paed once admitted and I did. He was a really lovely man who measured his head and reassured me it was large but not off the chart. I didn't know at the time that it wasn't a very well understood problem and so I took his word for it.

Anyway, he is now 2 and I've been reading this thread with tears in my eyes as I feel so angry at myself for not pushing further. His twin brother died of a brain abnormality just before they were born so this feels doubly unfair :(

I have a doctors appointment in a few weeks and we live in Birmingham so I'm glad we can be referred straight to a unit. Hope we can all keep each other updated!

Please don't be angry at yourself. It's so hard when life deals you a shit sandwich to do anything but cope. One of my children had difficulties and then was forgotten by the NHS. By this time I had had another baby after also losing their twin. More than ten years later, after giving up and going private and paying thousands, they are back with the nhs who have told me no harm has come to them and the relief is huge. Some of this I am certain (hoping) the private stuff has been a factor there. . All you can do now is try with where you are now. Be kind to yourself, @hardyboys .

You can't blame yourself @hardyboys, you asked 2 professionals who both dismissed it. Good luck at the appointment in Birmingham
I saw my GP, who admitted she wouldn't know how to refer to a craniofacial centre so just referred to paediatrics and said they'd refer if they thought it was necessary I've since emailed one of the centres for information on how to get a GP referral and they were brilliant. they also said waiting times are 6-8 weeks, whereas paeds is 2 years!
So I'll be ringing my GP Monday to ask again, fingers crossed they'll do it.

If a child does have craniosynostosis, they do need to be referred directly to a craniofacial centre,going via a paediatrician can delay any treatment. If one or more of the sutures fuse too early the skull cannot grow in it’s usual shape, if there is not enough room for the brain to grow and the pressure inside the skull can be raised. I worked at one of the centres for many years and can only urge parents concerned about this to see their GP and you can quote supra-regional funding for craniofacial problems

Hope the photo is ok. Great Ormond Street is the only one that requires referral from a paediatrician the other 3 will accept a referral straight from the GP

Thank you @Rodders92

I spent a painful 10 mins on the phone to a receptionist at my surgery today, who clearly didn't have a clue what I was saying and didn't want to do what I was asking, but eventually I got her to take some information to pass on to the GP. Fingers crossed they'll be able to get it done sometime this week. The nurse practitioner at the centre I've been in touch with has said she'll look out for the referral too, which I also told the receptionist.