Has anyone's baby had/ got a fused metopic suture?

[sleepysox]

My 4 month old baby has a fused metopic suture (front of his his skull), and it's very obvious and we have been advised that it needs surgery as it could cause the brain and skull to come under pressure as my son grows. We are considering surgery at the Radcliffe Hospital in Oxford.

I was wondering whether anyone's baby had had the surgery and whether they could give me the low down.

Hope someone can help.

Not direct experience, but my colleagues DD2 had a skull fusion (I can't remember exactly which one it was off hand, but her forehead was peaked iyswim), and had it operated on at GOSH when she was just over a year - which is their preferred age.

It was a total success, although the scar is wider than my colleague thought it would be.

I can ask her for which sites she got support from - I know she spent a lot of time thinking about it al beforehand

Sleepysox ((hugs))

My ds2 has a fused metopic suture but as it turned out did not need surgery. I do remember the worry when we were going through diagnosis though.

I can't remember her name, but one mum on here has had 3 sons all born with the condition. All 3 were operated on successfully, hopefully she'll see your post soon.

When we were staring at possibility of surgery for ds2 I remember reading about the Radcliffe and spoke to them on the phone. Its one of 4 national centres of excellence for craniofacial surgery in the UK so you really couldn't be in better hands. My friend's brother has had extensive cranial surgery there following a car accident and they really are marvelous.

THanks for your replies.

Good to know about the scar- it's not good about how large it was, but I mean it's good to be prepared. If we decide to go ahead with the surgery I'll ask whether I can sue Bio Oil to minimise the scars redness.

DS has a few things wrong with him, but this is the only thing that will need an operation and the thought of it is really scary. I'm also worried that it might take a long time for him to recover and be very traumatic for him.

Good to know that the Radcliff is so good. I spoke to one of the docs there today and she seemed to know what she was talking about.

DH and I have lots of thinking to do.

Can't speak on that particular issue as such, but my ds1 had neuro surgery at the Radcliffe in 2002 age 3+5days and they saved his life, fantastic surgeon and team in PICU afterwards,can't speak highly enough of them.

Don't know if he is still there but Tony McShane was his neurologist, straight talking and honest guy, very very good, can't remember the name of the surgeon unfortunately, all a bit of a blur.

My son had a subdural heamotoma and fractured skull, also bilateral retinal hemorages (sp!), although he has difficulties now he is walking and talking and developing, albiet at a slower rate than his peer group, most people don't realise that he has any issues until they've spent 10 minutes talking to him and he starts the same convo again.

In short the team there is fantastic.

Talking to her this morning, she said that of course she expected the scar to go from ear to ear, its that it's got wider with time. She has no regrets at all about the surgery, and is super pleased with the difference it has made to her DDs face. Of course, she was beautiful before, but it was quite obvious that there was a craniofacial problem, especially around her eyes.

jWW sorry to hear about what happened to your son, but I'm so glad he's doing well and that he had such great treatment at the Radcliffe.

CMOT I hadn't thought that the scar would get wider. I wonder if they can make the incision under the fringe?

I'm worried that my son will die under the anaethetic, if I'm being totally honest.

When I was pg and they found out that DS's brain hadn't formed correctly, they told me it was a condition incompatible with life.

(He has ACC which is where the corpus collosum hasn't been formed- the CC is like a corridor that connects the right and left brain so that the neurons can pass messages between the two. The gap where it should be is filled with water, and he has the fused metopic suture and enlarged ventricals.)

Even though they got it wrong and DS is tonnes better than they said he'd be, I'm still worried that he'll be taken from me. It's stupid I know, my brain knows this, but my heart can't get the message!

The scar is in her hair - sort of runs ear to ear, so it's not immediatly noticable, but her hair does tend to part round it, so I imagine that it might be fairly obvious on a boy with shorter hair.

The recovery time for her was very short - amazingly so.

The anaesthetic risk is always going to be a worry, whether your child has other conditions or not. So I understand your heart on this

It's good to know the recovery time is short.

RE the scar, the way I have to look at it, is that a scar is less noticeable than the ridge he has down the middle of his forehead currently.

THanks for all the info