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Craniosynostosis Lock Rss

My 4 month old has been diagnosed with craniosynostosis & is due for surgery in about 2 weeks.

My husband and I are petrified about this. Just wondering if anyone else has had children who have undergone the surgery? We dont know of anyone. Alot of the sites on the net are American and old aswell.

He has had surgery before for another un-related condition, so our anxieties about him going under are not as intense this time - but are still there. We are worried about his recovery time, pain relief, possible helmet therapy and long term outcomes.

Any info would be appreciated.

Thanks.

Jess - Deklan 2005, Gabrielle 2007 & Campbell 2009

hey jess. my 10 month old has the same thing. though he has had it since birth it has taken awhile for someone to do something about it. He is due to have surgery sometime in late jan/early feb.

I too am petrifed. last week we met with the surgeon and he explained the surgery and what they do and the possible risks. there were so many. but he also explained that at the RCH they do an average of one a week which is very comforting to know. i know he is in the best hands there. The surgeon told us that the first two days after the surgery will be the worst two days of your life, as he will be most likely swollen, brusied and not with it, but after thats over he said he will be pretty much back to normal. He didnt mention anything about helmet therapy to us so hopefully he will not need that.

I am trying not to think about the operation to much at this stage but when i do the thought makes me sick.

2 yrs

Hi Jess

My son was diagnosed with this at birth..he is now near 6 weeks old. We saw a neurosurgeon yesterday and he is having his operation in 2 to 3 months. It was very scary just after having the ceasar hearing something was wrong with him and then he was taken to neo natal for a while. The surgeon we saw was lovely and answered all our questions. His head shape is different he has a long head and a big forehead and as you said it isnt so obvious from the front.....no one really knew anything was wrong till I said. I am glad i found this thread and would love to chat with you and anyone else with this problem with their baby. I dont know of anyone else here. Take care

Tess, Breana and Jacob

hi jess

pretty sure thats your name from reading a few posts. My daughters saggital suture has fused It has been like that since birth. I found chloes email and have been in contact with her.

She sent me photos of lochie which were really reassuring. I cant beleive how good he looked after 2 and a half months.

what suture had closed for dekklan. It also seems recovery for him wasnt as quick as lochies. I havent sat here and read all the posts so i will probably re ask questions that you have already written about. So if i do sorry in advance.

My daughter is having surgery the fourth of july. about 3 days prior to being 5 months.

Like i said to Chloe, why do we think the worst will happen???

would love to see photos of deklan.

Hope i am getting all these names right.Looking forward to hearing from you.

Thanks sam

sam, sa, Chloe 07.02.06 Nicholas 19.08.04

Hi Jess
We are in the same position as you, my 3 mth old is due to have a cat scan to confirm if Abbey has craniosynostosis. We are really scared. Poor Abbey has had a horrible start to life, she was in Joondalup ICU for 1 week after born, she had a few problems but 1 major one was plasia acutis (which is a skin deformity, the skin doesn't grow over that part of the head) luckily that has just scared into two little dots. We have had to have an MRI when Abbey was 5 weeks and she was great, didn't move at all.
We just can't wait until the cat scan is done so we know where we stand.
I don't know how I am going to handle see her under anestetic.
We are worried about long term outcomes, the peditrician has just pointed out her eyes might be a bit lazy, she tends to go cross eyed alot but we thought this was her trying to focus while getting her eye site.
Would be great to talk and get replies to help us through this horrible time.

tash & 2 girls

Hi,I was just having a browze on the site when i found this!!My brother who is now 22 had Craniosynostosis as a baby and had several operations.It sounds funny but i was 10 at the time and can remember everything about it ,the ops the worry of my parents,the questioning as to why!!But just to let you know as i said before he is now 22 and you would not ever know that anything was ever wrong unless you knew.He came through the ops no worries,and mind you feel down a flight of stairs after his last op at the age of 18months(my mother nearly died!!)He has lived avery normal life played footy etc etc and has just had a beautiful little girl.Back 22 years ago the technology probably was not as good as it is today and everything went really well!!So good luck with everything and i hope this may have helped to reassure you that bubby will be ok!!xxx

DD 29/10/01 DS 08/09/05

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