Anyone here had a child with CRANIOSYNOSTOSIS?

[smileyjo]

Hi my daughter was born with her skull bones prematurely fused together at the back of her head. The paediatrician at the hospital picked it up a day after she was born and she was supposed to have an operation today at Frenchays to correct it but at the last minute they postponed it for 2 weeks as she was a bit snuffly. The thing is that she has been like it - snuffly I mean - since she was newborn and I took her to my GP a couple of days ago to have a pre-op MOT. he said that her chest was fine and that some babies are just like that. At the hospital they also did a chest x-ray which came back clear, her sats were 100% and her temperature was normal but the anaesthetist said that because it was a 'cosmetic' surgery and not serious she didn't want to take the risk. I'm feeling very frustrated at the moment. I understand their point of view but I felt that no-one believed me about her snuffliness and that I was just trying to push them into performing the op. The staff there were lovely but I'm just afraid that when we go back in 2 weeks it will be the same again and she is supposed to have the op before she is 5 months old and she's 4 month now. Apparently they can do the op after 5 months but it is a much more complicated procedure with more risk so obviously we want to avoid that. It is making me wonder if it is all worth it even though I worry that she will be upset when she is older as she may have problems with teasing because of the shape of her head. At the moment she is blissfully unaware of it all while I am getting greyer by the minute! just to complicate things, it is a 400 mile round trip to the hospital and we also have 2 other young children at home who will need looking after while we are going back and forth to Bristol. Sorry to moan on but I could have torn my hair out yesterday. Anyway, if you're still reading this do you a) have any more info on craniosynostosis especially sagittal, b) ever been through this kind of op with your own child and c) how do you get rid of the snuffles?!!! Thanks a lot.

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Hello smileyjo - YES, my DS was also born with saggital synostosis (fontanelles fused at the top of his head) - he was operated on at 6 months (Great Ormond Street) - my understanding is that the op can be done around 6 months so I wouldn't imagine that a few months either side will really make a huge amount of difference. It is obviously sensible to avoid having a General Aneasthetic if your child is a little 'snuffly'.

It is a BIG decision as to whether to put your child through such an operation when it is for 'cosmetic' reasons but my feeling was that without the op my DS would have been left looking very 'disfigured' and, sadly, in our society it does seem important to 'fit in'.

There is another mum on mumsent whose child has craniosynostos and I believe her child didn't have the op - but I haven't seen her posting for a while. There is an old thread 'very odd shaped head' that might give you some more info.

There is an excellent support group called 'Headlines' www.headlines.org.uk - they were a tremendous source of support & help to me and put me in touch with a couple of other families who have had the op done.

I will send you my personal details via Tech and feel free to e-mail me direct or phone if you would like to talk anymore about this.

Good luck - I know it is such a worrying time but now our DS is two years old and it all seems a long time behind us, and we are glad that he had the op done and all went well.

Best wishes.

Smilyjo, I know a bit of what you are going through in that they thought my DD had craniosynostosis. This wasn't picked up until she failed her 8 month development check and then we had the wait of being referred to Great Ormond Street Hospital, them losing her notes, being referred again. Once she was assessed at GOSH they told me that DD doesn't have craniosynostosis. With my DD2 they thought she had unilateral craniosynostosis where the plates at one side of her head have fused together, the plate in front of her left ear. The reason the Consultant came to the conclusion she didn't have this unilateral craniosynostosis is because, unlike your daughter, it was not really picked up on until she was about 8 months old. I noticed at about 5 months of age her head was rather "odd shaped" but when I saw the doctor she told me it was nothing to worry about. It was only when we were referred to our local hospital for delayed development (fine and motor skills) that they picked up on her funny head shape and decided to refer us to GOSH after having spine and skull x-rays that came back with the opinion that "synostosis could not be ruled out".

When this was first going on, I looked at varoius web-sites (most of them american hospital sites advertising their skils, expertise) and got a lot of comfort from seeing children pre- and post-operative.

When I thought about DD having to have the operation, although I was worried about it, I know I would have gone ahead, even if purely for cosmetic reasons, as everyone wants their child to have an easy a life as possible and not being teased, and we all know how critical children can be about other children. Obviously if the operation is required for more serious reasons, pressure on the brain, etc. then the decision would have been taken out of my hands.

Even now DD still has a fairly lop-sided shaped head (although only noticeable when looked down on, rather than face on) but to me she is no different than my other two children, she is still as beautiful and absolutely wonderful.

Thanks for the messages. We've been sent another date for her op on the 15th of this month so I'm keeping my fingers crossed that it will be ok this time. she is still snuffly but I'm not surprised by that as she's always been like that. I don't feel so frustrated by the delay now as it gives me a little more time to prepare for it, practically as well as mentally. I've had a look on some of the american sites and there are some useful pictures of pre-op and post-op children and the difference is quite amazing. Thanks again, I'd never heard of this before my daughter was born so it's all been a bit overwhelming.

Just to reiterate maryz's good wishes; do hope all goes well; it can be a shock seeing them straight after the opp - also due to swelling & bruising the head shape did not look that much different initially so I thought ' oh no, I've put him through all that for nothing' - but it did go down very rapidly - yes, children do seem to recover remarkably quickly from major operations.

Let us know how you get on.

my four week old baby boy was diagnosed with sagittal craniosynostosis at two days. We are waiting for our first appointment with a neurosurgeon at Southampton General Hospital. Is there anyone out there in a similar situation?

Hi - Our 5 month old son has been diagnosed with sagittal craniosynostosis - and will have an operation at Great Ormond Street. Has anyone been through this operation with their child? Could anyone share their experience with us? We are petrified about what will happen. Thank you, Jo