Did the child have surgery, either in Switzerland or another country?
Just got a diagnosis on our little girl last week, and trying to gather as much information as possible.
Thanks!
Anyone on the Forum had a child with Craniosynostosis (condition where a suture in the skull closes too early)?
How old is the child?
From memory (it was a while since I looked it up) you will have further tests and monitoring, and it depends which suture has closed and whether they think other things are all normal...
Best not to read too much. Far too much misinformation... Hopefully you get a fast appointment with the specialists.
I would suggest you write down your questions before the appointment,mand go over them with the doctor and take notes at the appointment as well. Otherwise, it just gets very overwhelming and can be hard to take the information in.
Have a relative whose 10 month old child was diagnosed recently too. As far as I understand, most cases can be treated by a routine surgical procedure, where they deploy springs between the bones in the skull to keep them apart as long as needed. The springs are removed later.
Wish you all the best!
I imagine you will be referred to Inselspital in Bern considering you live in Fribourg
Here is their website http://www.insel.ch
Best wishes
Hi all,
Thanks for the replies so far.
She is 11 months old.
She was diagnosed at Inselspital Bern last week. We were in such total shock that we didn't ask the right questions. The doctor has recommended surgery, but we are very nervous thinking about it.
We are waiting for more tests to determine how urgently she will need the surgery. We will definitely take a list of questions to our next appointment.
Hello There,
my son, (he's 4 by now) was born also born with a condition that involved Craniosynostosis. We live in zürich, so all the treatments took place here at the kinderspital zürich. Our son had his first operation when he was 18months old. we where scarred sh..less. we didn't really have a choice, as the risk of complications due to the pressure on the brain being to high.
our surgeon here in zürich was prof.dr. obwegeser. great guy and one of the leading experts here in switzerland. the operation was though, and we spent about 2 weeks in hospital before returning home. my son made a fast and good recovery. just prepare yourselfs for the time in hospital. i can give you some practical tips if you like.
my son just had his second operation now in august. and again, so far all good.
you can pm me if you would like to chat more.