Any experience with Metopic Suture?? Ridge at the front of baby's forehead

(15 Posts)
hope123x Mon 17-Feb-14 21:32:40

When my ds was born I noticed a ridge running from the top of his forehead down to his nose, I thought it was where he had been squashed during labour and this is what the midwife and hv told me. I saw a paediatrician when he was a couple weeks old for a different reason and while we were there he mentioned the ridge saying we should get it check at 6 week check as the two bones at the front of his head could have fused to soon. At 6 week check my dr referred me to another paediatrician where last week she sent ds for an X-ray an referred him to a specialist in oxford. Just wondering if anyone has had any experience with this sort of thing?? Or if anyone's babies have had a metopic suture??

JiltedJohnsJulie Tue 18-Feb-14 08:44:00

No experience sorry but didn't want you to go unanswered. Have you tried posting in Children's Health?

hope123x Tue 18-Feb-14 15:00:43

Thanks! I didn't know if this was the right section to go in.. Will try children's health smile

JiltedJohnsJulie Tue 18-Feb-14 18:35:14

smile

Hi Hope i've just seen your post. My DS was born with Sagittal craniosysnostosis (the main suture front to back) and had his corrective surgery at Oxford under Steven Wall when he was 13mo (hes 2 now)

The team at John Radcliffe are absolutly amazing, Sue and Kate the cranio team nurses are always on the end of a phone if you need then too.

If you've not already found it then Headlines is a great website (although they do deal with a lot of syndromatic cranio conditions and not so much with the non syndromatic) and also have a facebook group which is very busy and supportive. If you want to see a bit more of my DS's cranio journey I have a (sporadically updated) blog in the mumsnet bloggers network a search for craniosynostosis there should bring it up.

It is incredably scary learning that your child is going to need major head surgery and I know that I spent the first year of my DS's life over analysing everything he did to see if it a sign that his head was causing him problems.

Do please ask any questions you have and or PM me if you prefer. i won't be able to answer some of the more specific Metopic questions as the different sutures can cause slightly different 'issues' but you are not alone and there is support out there.

hope123x Fri 21-Feb-14 19:43:21

Hi, thanks for replying to my post!

Did you have to wait untill your ds was a certain age to have the op? When did you first notice it??

I've recently had the report back from the X-ray and it 'confirms fusion of metopic sutures'... So waiting to see the drs at oxford. The reports being sent to dr wall so good to know were are in safe hands!

I'll check out the websites and blogs you mention. Thanks again smile

There are 4 hospitals in the country that operate on craniosynostosis and they all do it a little differently! Oxford prefer to wait until they are between 12-15 months to operate as they feel it gives a better overall result and a lower rate of needing a second surgery than those centres who prefer to operate before 6 months. There are arguments for both approaches but I certainly have no complaints with their decision and they give you all the facts and figures. I think the age window is the same with metopic but I'm not entirely sure.

When you go for your first appointment with them (and any others actually) there will loads of people in the room. Mr Wall will be there but also an eye specialist, hearing, dietician, speech therapist and a couple of others who I can't remember! That all sit in on clinic just incase you have any questions for them (you don't have to have and you won't need them all but it makes sure everyone is on the same page if need be)

hope123x Sat 22-Feb-14 19:36:43

I saw somewhere that the ago for op for metopic is usually around 15-18 months. I don't do well with the whole wait and see thing!

I know that things like this can have effects of the brain because of pressure, did your ds show any signs of this??

I found your blog and found it reassuring smile I'm glad your little boy is doing well

I know the wait and see bit is horrible isn't it.

We were lucky and DS didn't show any signs of high inter cranial pressure but that is one of the reasons they recommend the surgery for. Most craniosynostosis cases will be operated on before high icp becomes an issue. I think with metopic one of the other issues you may face that we didn't with sagittal is interference with eyes because of the triangular shape of the forehead.

Glad you found the blog reassuring it really is amazing how fast they bounce back from the surgery.

hope123x Sun 23-Feb-14 19:43:35

When we saw the paediatrician she checked his eyes and said she could see no pressure behind them?! So that's a good sign for now but guessing they will keep an eye on it aswell. It sure is scary stuff, doesn't seem quite real that he might have to have a big op... Thanks for sharing your experience, it's helped a lot smile

BarbarianMum Sun 23-Feb-14 22:20:39

Ds2 has this, diagnosed at 6 weeks. He did not need surgery in the end and this is quite a common outcome for milder forms of the condition.

Can def recommend Headlines also.

hope123x Mon 24-Feb-14 21:52:50

How come some cases don't need surgery??

As babarian said in very mild cases where the head 'deformity' does not get more pronounced as they get older (as happens in the majority of Craniosynostosis cases) the choice may be made not to operate.

However I have to say that I have met a single craniosynostosis parent in RL who has chosen not to operate. barbarians DS was in my experience of this very lucky and of course your DS may be too. At the end of day however severe your DS craniosynostosis turns out to be the choice to operate will always fall to you as his parent, the doctors can give you figures and advise you but it will always ultimately be your call.

I'm afraid it all comes down to that waiting game again.

BarbarianMum Tue 25-Feb-14 13:38:17

Hope craniosynostosis cases get operated on for two reasons - either to relieve pressure on the brain or, more commonly, to correct deformation of the face and skull.

In the case of deformation, the extent and result depend very much on which sutures close when. W ds2 his metopic suture closed at about 4 weeks and most of the others by 8 mo/a year (he was originally thought to have had all sutures closed by 4 weeks which would have been much more serious).

Anyway, in his case, the earlish (but not too early) closing of his other sutures actually helped preserve the symmetry of his skull. His face shape has not been affected and the strong ridge over the metopic suture is not very noticable now (although it was at 6 months). His skull has prominent ridges all over it (along the line of each suture) but these are invisible under his hair. When he goes bald one day it may look a bit odd but the extent of surgery he'd have needed to alieviate that would have been massive. While we would definately have opted for surgery to prevent brain damage or correct severe skull or face deformity, we certainly didn't want it for the sake of a smooth outline.

I know of several children (all boys interestingly) with metopic craniosynostosis who didn't need surgery. All, like ds2, were picked up in hospital when there for other reasons, so I suspect this mild form is under recorded. I also know several children who have required surgery for the same condition. All are absolutely fine ( in fact I can remember the neurosurgeon we were dealing with refering to the surgery as 'major but routine'. It didn't feel very routine to me, as a mum with a small baby though)>

hope123x Tue 25-Feb-14 19:45:52

Thank you both for sharing and for your advice. It's a lot to take in and even though I noticed the ridge after birth and the dr said about metopic suture from early on I didn't quite prepare myself for it to actually be what it is! Think I was in denial! Its a horrible waiting game which I'm sure you are both familiar with

Hoping to have a letter for the appointment within the next couple of days then can prepare ourselves for meeting the specialists

Thank you again smile

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