anyone dealing with Craniosynostosis?

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anyone dealing with Craniosynostosis?

Postby mrsjoh » Thu Oct 16, 2008 9:02 am

anyone dealing with Craniosynostosis?
sutures in the skull of an infant or child close too early, causing problems with normal brain and skull growth. It can result in craniostenosis, which is the skull deformity caused by the premature closure of the cranial sutures.


two u/s techs noticed the abnormal shape of our baby's head, and while they can't diagnose it in the womb, said there is a good chance we have this :( we have a severe chd too, I wish they would stop finding things, it seems like there are going to be endless surgeries for our poor baby :(
Jasper born Nov 25, 2008-Feb 23, 2010 www.jaspersheart.com
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Postby MLF2MLB » Thu Oct 16, 2008 6:30 pm

IS THAT A DEFIENETE? WHAT ELSE CAN YOU DO ABOUT THIS?
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Postby mrsjoh » Thu Oct 16, 2008 6:48 pm

our chd is definite, the head is abnormally shaped, we won't know until birth if the condition will require surgery, I just want to get as much info on it as possible so that I can be prepared
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Postby lizzen » Thu Oct 16, 2008 7:17 pm

:hugs: Has the peri suggested this condition is a possibility or just the techs? How are his head measurements, larger or smaller than expected? It's really hard when you have a birth defect that can't be positively identified until after birth. We knew our little man had clubfeet, but not how severe it would be until he was born. Small potatoes compared to what you're going through, I know.

Is it possible that baby just has an unusual head shape? My oldest son's head consistently measured two to three weeks ahead at each US. But it was because his head was oddly shaped. He's six now and it's still shaped funny. Shh, don't tell him I said that! :wink: Maybe that's all it is for your little one. I sure hope so.

You're getting very close now, try not to worry too much about this newest possibility. At this point that's all it is. Please keep us posted on your progress. I'll be thinking of you!
The cleaning and scrubbing will wait till tomorrow, For children grow up, as I've learned to my sorrow. So quiet down, cobwebs. Dust go to sleep. I'm rocking my baby and babies don't keep.

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Postby lizzen » Mon Oct 20, 2008 9:49 am

Hi! I was just watching the news and they did a story about a new, minimally invasive treatment for craniostenosis. Here's the link, I don't know if they'll post the video, but the info is there. Sounds very promising if this is in fact what you're dealing with. IDK, though, my son's head looked a lot like the pictures they showed and is still kind of bumpy at six years old. Maybe it's just his normal. Anyway, hope this helps some!

http://www.wftv.com/health/17761692/detail.html
The cleaning and scrubbing will wait till tomorrow, For children grow up, as I've learned to my sorrow. So quiet down, cobwebs. Dust go to sleep. I'm rocking my baby and babies don't keep.

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Postby mrsjoh » Wed Oct 22, 2008 12:07 pm

thanks ladies for all you advice and support, really I wont know defin until he is born... I will defin post an update as soon as I can!
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