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.