Babys Head Shape

[Sian94]

Hi I was wondering if anyone had been referred to pediatrics due to babies head shape, my little boy is 3 months old and has recently been to see a specialist as his fontanel has closed and they think his bottom right plates have fused together meaning he could have Craniosynostosis which is what I'm terrified of. They need to have a meeting whether or not he can have an xray or cat scan to see if they defiently have fused and if they have he needs to be referred to liverpool hospital as they specialise in this area 😭😭 they also think that Plagiocephaly (flat head syndrome) could also be the issue but their leaning more towards Craniosynostosis because of the fontanel closure has anyone had any experience of this I dont know what to expect 😓😓

www.nhs.uk/conditions/craniosynostosis/

There are 4 specialist NHS centres for craniosynostosis:

Alder Hey Children's Hospital in Liverpool
Birmingham Children's Hospital
Great Ormond Street Hospital in London
John Radcliffe Hospital in Oxford

Hi @Sian94,

DD2 (now 12) was diagnosed with left suture cranio at 3 months and had surgery at 15 months at BCH to correct development. She's doing fine now.

I would highly recommend the Headlines website for connecting with other families and getting information as it is a specific UK site for craniosynostosis.

Aww thankyou I'm just in the woods with it all I'm trying to think of the best possible outcome but it's hard when the doctor at the hospital where I live couldn't really tell us anything becuase he said they would need to scan his head but they dont want to do that either because of the radiation 😭😭 so should know by monday if he can have one or not I'm just over thinking everything, possible brain damage I'm so scared

Feel free to pm me if you need to

It was a while ago with DD but try not to google too much as it throws up a lot of US sites where they tend to go for surgery quicker than here so it can make you panic. The Craniofacial Clinics we have here are absolutely fantastic and so on-the-ball.

As an aside while I don't have any experience with this particular issue I do have plenty with alder hey, both as a child myself and with my own ds (who recently had surgery there) I can say hand on heart that it's a really good hospital and the staff there really know their stuff so if you do end up referred there you're in excellent hands

I have experience of Plagiocephaly in children but not Craniosynostosis. It is important to recognise you will only get support, not expert medical opinions.

If you get a Plagiocephaly diagnosis you can PM me and I will give you some one-to-one support. I know all these hospitals are great, though my personal experience is of the last three for different occasions. I really rate the JRH group of hospitals under the NHS.

I mean you will only get support on Mumsnet, of course.

I agree with @AI203 and even in terms of support, you will find very few parents with experience of craniosynostis as it is classed as a rare condition which is why I recommended Headlines as they have support forums but also information on diagnosis and what what follows.

@Al2O3 thankyou I'm just in the dark with it all I really want it to be Plagiocephaly as it's more than likely it will correct its self with physio so me and my partner are praying it's that but I've never even heard of Craniosynostosis so wasnt sure what it was just looking for some similar experiences x

Totally forgot to say, DD obviously had an imaging scan but she has definitely no signs of brain damage nearly 13 years later, just a typically moody pre-teen delight

My eldest was born with left coronal Craniosynostosis & was corrected at John Radcliffe, oxford aged 2.5 (now 8.5) You have been referred to a supra Centre specialising in surgery for this condition so try not to worry in the meantime. I second the pp who recommended Headlines xx

Following this with interest. My little boy is 5 months old and has been going to an osteopath for what we thought was plagiocephally. He has a preference of always looking right when he’s lying on his back so only one side of his head has flattened and his ears are completely out of line, his head is in a diamond shape. Since going to the osteopath she has also said that his ribs and back are twisted and she is concerned that it may not be plagiocephally and might be craniocyntosis. So he has been referred to a paediatrician at hospital and I’m terrified for him. He can’t even roll from front to back yet and doesn’t even try to do so.

@Sunflower160 I cant comment on your childs needs so will say Headlines again as MN is really not the place.