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Craniosynostosis. Can anyone help me? Rss

Hi. My newborn son has been diagnosed with craniosynostosis (or fused skull bones). I'm begging for anyone who has been through this condition to talk with me.

I've been told my son needs surgery to un-fuse the bones in his skull, but until our appointmt with the craniofacial surgeon on 26th feb, I'm completely in the dark, and having trouble dealing with the fact that my gorgeous little miracle has a tough journey ahead of him.

If anyone out there has been through this, or know's of anyone who has then please do look me up cause I'm hurting really bad and would love to chat with others in same boat.

Thanks,
M xxx
Hi there,

I know how you feel! It's an awful time.

My son (who is now 4), was diagnosed with sagittal and left coronal craniosynostosis when he was 8 weeks. He had surgery when he was 4 and 5 months.

Am happy to chat with you and help in anyway I can.

Jess x

Jess - Deklan 2005, Gabrielle 2007 & Campbell 2009


Hi. My newborn son has been diagnosed with craniosynostosis (or fused skull bones). I'm begging for anyone who has been through this condition to talk with me.

I've been told my son needs surgery to un-fuse the bones in his skull, but until our appointmt with the craniofacial surgeon on 26th feb, I'm completely in the dark, and having trouble dealing with the fact that my gorgeous little miracle has a tough journey ahead of him.

If anyone out there has been through this, or know's of anyone who has then please do look me up cause I'm hurting really bad and would love to chat with others in same boat.

Thanks,
M xxx


Hi there,

my nearly twelve week old was diagnosed with craniostenosis nearly a month ago. We are under regular review with a paed to monitor the growth of her skull...by the time she is 4 months old we should know whether she we require surgery..fingers crossed.

There is a chance that not all of the sutures have completely fused and we are hoping this will be the case. She has had a small fontanelle from birth. It was only when her forehead began to bulge that we pushed for things to be taken further. Her eye has now begun to bulge a bit now too...still hoping for good news though.

How did you end up going?? Would be great to chat to you about this.
Amanda
Hi, I was wondering how you got on? My wee boy was diagnosed at birth with sagittal, he is 4 weeks now and we are facing surgery in Wellington at 3 months. Would love to talk to other nz parents as there doesn't seem to be any support out there and it is all very daunting!

Thanks
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