Thanks for all your kind support. Sorry I didn't paste the outcome earlier, but been very busy and this has been my first opportunity to log onto Mumsnet.
Well, we went to Great Ormond Street on Thursday and saw Dr. Richard Hayward - lovely, kind, endearing, down-to-earth doctor. He asked me to explain about Sasha without mentioning the synostosis - he said he had read her notes but wanted to hear about her from me.
Told him what she is like - very outgoing, very sociable, loves people, very contented, happy, etc. He asked about her history leading up to the diagnosis of synostosis - told him everything from when I first mentioned to my doctor about her funny shaped head when she was about 5 months old up to her failing her 8 month development check, referring her to our local hospital, doing spine x-rays, skull x-rays, brain scan, etc. Told him she has failed her hearing test on countless occasions. Told him she is now coming on great - bum shuffling everywhere, walking around the furniture, getting herself to a sitting position from laying down (only been doing this for a week).
Mr. Hayward then felt her head, looked at her scans, examined her closely and turn round and said she does NOT have synostosis and she had been wrongly diagnosed at my local hospital.
He explained that babies mattresses these days, compared to say 20/30 years ago, are a lot harder and babies are now put to sleep on their backs whereas they used to be put to sleep on their fronts.
He asked if she always seemed to turn her head to one side as a small baby and I told him that she did but that I would try and get the other two children to play the other side of her to try and get her to look the other way - she would do this for a small amount of time and then turn back facing to the right.
He said that what she has is quite common and it would right itself. I did mention to him that I went on holiday in August (and left her at home with her dad), when I returned I thought her head was not as bad as what I thought it was. He said that it is now righting itself, albeit very slowly, but that by the time she is 2/3 it won't be noticeable at all. He said that her head would never be symmetrical but that no-ones ever is.
He said he was going to write to my GP and hospital saying that he had no need to see her again.
Regarding the failed hearing tests, he said one of the problems with synostosis can be hearing problems and sight problems. He said that, in his opinion, she can hear perfectly well but that my hospital was being cautious - because she didn't pass the hearing test with flying colours, they were putting it down to her having synostosis. He said that he expects next time she has a hearing test, she will pass as there is now no underlying problem that the hearing problem can be attributed to. He said it is very hard to testing hearing in small babies - as they are more often than not (and this is very true of Sasha) more interested in the person sitting in front of them trying to distract them instead of the silly noise that is going on behind them.
I got a letter from my local hospital this morning saying that Sasha's follow-up development appointment scheduled for Wednesday 5th February has been brought forward to Wednesday 29th January. Because I only got the letter this morning, obviously I missed the appointment but now they have slotted me in for this Wednesday which was my original appointment date.
Everyone I have told about Sasha being given the all clear have been saying how relieved I must be, etc. Of course I feel relieved but, whatever the outcome, she would still have been my beautiful baby and it wouldn't have changed how I feel about her.
When I mentioned to Mr. Hawyard that Sasha has delayed development, he asked whose opinion this was and I said St. Helier - they have put her at aobut 4/5 months behind her development age. He said this was rubbish - although she is not a "text book baby", doing this by this age, and that by that age, she is at exactly the right development stage for her.
She is very big (about 88 cm long) and weighs 27 lbs and is very a just laid-back, unmotivated, unfrustrated baby.
At the end of the day, she is who she is and she will get there eventually.