Newbie from England

[wozzlem]

Hi all. I found you through a link on Wikipidia.
I'm Mandy, I live in the UK and I have 3 daughters. Emma Robyn, aged 18, Sarah Louise, 17 months and Lily Rae, 13 weeks.
Lily was 5 weeks prem and from the start, I noticed something was not right with her head. I mentioned it to a health visitor and was told it was fine, don't worry about it so I told another one who told me to tell my doctor when Lily had her 8 week post natal check. In the meantime, the health visitor refered us to a physiotherapist.
When I told the doctor, he asked a few questions about lilys development and refered us on to a neurosurgeon.
Whilst we were waiting for our appointment, we were seen by the physio who told me Lilys head was the shape it is because of positioning in the womb. She was breech but I still wasn't convinced. She gave us exercises to do.
In the past few weeks, Lily has become very unsettled, crying alot.
Anyway, on Friday, we finally had our appointment with the neuro surgeon. Although I have known all along there was something wrong, it still came as a shock to me when he told me that some of the plates in Lilys head had fused too soon. He didn't actually tell me its called craniosynostosis, I found that out by googling 'fused skull'
We were sent for xrays and photographs
Anyway, he told me he was going to have to speak to a consultant at a hospital on the other side of England as our hospital doesn't deal with it and he also told me it could be the cause of Lily being so unsettled. He also mentioned that she could be brain damaged as a result as she doesn't yet smile and she very rarely makes eye contact. We now have to wait to see what this specialist has to say as Lily may need an operation. I can't see she wont as if her brain is still growing and her head isn't, wont this cause more problems?
I'm still in shock and very scared. My husband went mad at me because I looked on the net and scared myself more. A little knowledge can be a dangerous thing. I know that as I used to be a healthcare professional myself.
Anyway, I'm glad I've found you all. I know most of you are from across the pond but I thought maybe you could give me some advice and reassurance. Do you have any members from England?
I'm really sorry this is so long and possibly rambling, My head is still mush at the moment and I can't really think straight so thankyou for taking the time to read.
Mandy x

[mayashekhina]

Oooooh, welcome to the group Mandy, I can only imagine what a terrible shock it has been for you but seriously have a look around the site at some of the posts about surgery and post surgery results it is all really encouraging.

As far as not smiling or making eye contact at 13 weeks it is a bit concerning but there is a small chance the fused plates could be affecting her vision which does have a chance of rectifying itself post surgery once things have a chance of repositioning itself. Make sure when you get your appointment that this issue gets discussed, because even if this proves not to be the case there are plenty of supports and helps in place to assist you and little Lily Rae, dont worry too much yet until you get to speak with the 'experts' as they will give you a much better picture of what is actually going on than what your current neurosurgeon has done.

For the cranio side of things I highly recommend you staying with this site as it is so supportive and informative there are some great families here more than willing to share their experiences with you, I found I suffered information overload and ended up just going around in circles by searching all over the internet.

Im an aussie girl but there are a few lovely local families to you on here.

[charliesmummy]

Hiya Mandy, Im from Northamptonshire England.
Im really sorry to hear your going through this but you have found a fantastic site with the most wonderful people.
My son Charlie had his op for Metopic synostosis 3 weeks ago and Oxfords John Radcliffe Hospital. There are 4 main supra hospitals that specialise in cranio, Birmingham, Oxford, Great Ormond street & i think another in Liverpool. You really need to get your doctor to refer you to one of these hospitals as they are the best. Have you heard of Headlines? If not try and get in contact with them as Gil will give you all the information you need to get your referal.
The best thing for Lily is to have a 3D CT scan which will show exactly what's happening to her scull. I know it's easy said that done but try not to worry too much as Craniosynostosis is a fixable condition. Im going away for 1 week so wont be on here but hopefully Annmarie will see your post and give you all the details for Headlines, if not send her a message, her signature is Jacksmum if you search in the members list. Take care and Welcome to Cranio Kids xxx

[Jacksmum3]

Hi Mandy this is Annmarie here. I am sorry to hear what you have been through and I hope we can reasure you and answer any questions you may have.
From pictures you have seen of the conditions could you have a guess as to what suture/sutures are fused as this will help lots or send a pic to me and I may know although I am not a doctor I feel I can tell just by looking. Frontal view, side and top would be good.
Headlines website ad is www.headlines.org.uk there is lots of info of the hospitals to choose from. If you get in contact with Gil she can give you some info and some magazines too.
Where abouts in England are you from? I am in North Devon and Jack had his surgery in Oxford.
Goodluck with everything and if you what to email me do so at annmariejm@hotmail.co.uk xx

[Katie]

Welcome Mandy, I'm glad you found us! As you've already discovered, we have members from all around the world here, so you should be able to find plenty of support.
I'm glad to hear that the neurosurgeon got the ball rolling, but I know how difficult the wait is. I remember Dillon being very, very fussy pre-op, and he had some delays, but the good news is that surgery can correct a lot of that.
I agree with Racheal that the lack of eye contact could possibly simply be an eye muscle concern vs. a developmental concern. Eye muscle problems can be somewhat common with cranio, and can make a child appear to be looking elswhere. Does she seem to like to tilt her head to one side? If possible, you may want to ask about seieng an optholmologist at your next visit. Dillon just had his eye muscle problem (4th nerve palsy) corrected last week and he's doing great!
I know how scared you are, we've all felt that same fear and it's awful. If you take a look around at all our stories though, you will see that these kids are incredible and do wonderful!
Once again, welcome! You've found a great group of supportive people here

[mommysbudbud]

Welcome to the group!
My son was born with the soft spot that runs from the front of his head to the back of his head (sagittal) all ready fused except for a small part in the middle. We were given a surgery date for when he was 6 months old. I was so worried, especially at the fact that he was a preemie (born a little over 7 weeks early). I didn't think he would be big enough for the surgery. But he was. His metopic suture (forehead soft spot) was getting wider but a few weeks before his surgery, it felt like it was almost closed. By the time his surgery date arrived, both coronal sutures (soft spots on the front sides of his head) were fused half way up.
Our craniofacial team said that even though the soft spot has recently closed, it is still an expandable area. Which was a good thing.
I hope your little one's doctors get her seen very soon.
We are here for you, we understand your fears and your concerns.
Best wishes to you, Dawn

[Pocket]

Hi Mandy
I am a UK member - but live across the sea in Northern Ireland. My little man is two and half years old and just been diagnosed with metopic synostosis. I, like you, scared myself half silly looking up craniosynostosis on the net but thankfully (like me) you found this site. In the one week that I have known about Cranio Kids I have learned so much and more than anything I don't feel like I am alone. Thanks to all these great ladies taking the time to share their stories. I don't have a date for surgery yet but I know that when the time comes there will be a cushion of kind words and helpful advice to carry me through.
Good luck with Lily Rae (gorgeous name, I have a newborn neice called Emily Rae)
Welcome to the site from another newbie - Sam (we are in great hands!!!!)

[Tamz]

Welcome Mandy & Lily there are ots of nice people and a lot of warm hearts and support, I am a cranio adult and a newbie hee as well. But I promise you will have all the support we can give.

[Jennifer]

I'm glad you've found us! We're here to help. I wanted to address the 'doesn't make eye contact' comment. My Emily had the same thing.....I just never felt she looked at me-- it was almost as if she was looking through me- I noticed it at a very young age. The doctors checked her eyes and everything came back fine---but she just never looked at me. My husband noticed it too. Less than 1 week post op and she just looked at me--really really looked at me. It was the best feeling. I'm assuming it had something to do with the pressure and w/ the release of pressure, everything went back to 'normal'.

The England moms have already stepped in-- getting your appointments and whatnot- they'll help you best. But we're all here to help and offer support. Again- WELCOME

[jenniferann75]

Hi Mandy, welcome to the site. I'm so glad that you found your way here. It's such an informative and very supportive place.

My husband and I have a similar story. When my Andrew was born his head was very narrow and elongated. When we asked why we were told that it was because he was breech in the womb. This continued to be the answer that we got until I did my own research on the internet. He had surgery to correct this (sagittal cranio) in July.

I hope that you will soon get the answers that you need from the doctors. We all know how scary it is to be waiting to find out what is going on with our little ones.