My baby has craniosynostosis...

Tara - posted on 11/12/2010 ( 4 moms have responded )

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My 5 month old daughter was just diagnosed with craniosynostosis. She has fusion of the sagittal suture. Has anyone had experience with the surgery that can tell me what to expect before/after? They are indicating that we won't do surgery until she is 9 months old. My sister had the same fusion, but they did surgery at 10 weeks and it was in 1969. I'm sure a lot has changed since then.

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Jennifer - posted on 05/28/2012

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A lot has changed even in the past 19 years. My friend's daughter had the surgery as a baby and is now 19 and in college. It sounds like it was harder on Mom than daughter. Hang in there. I'm glad they found it and can do the repair relatively early. Best of luck with your darling girl!

Sarah - posted on 05/25/2012

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my son had craniosynostosis ,they did surgery on his head when he was 11 months old and I was very scared ,I hope your daughter is ok

Katherine - posted on 11/12/2010

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My very good friends son had it and had the surgery at 10 months. The only hard thing was the emotional aspect of it. He did excellently(this was 2years ago) he had to wear a helmut for a year and now he's awesome.

Amy - posted on 11/12/2010

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My son didn't have the front fontanel, but x-rays showed he didn't have craniosynostosis. We didn't really notice it until a friend of ours, a Physician's Assistant, pointed it out to us. His son had it, and it was discovered at 6 weeks. They did the surgery right then, and everything went smoothly. He's now 30, so I'm sure things have changed, but if it helps at all, if they could do it with the lower technology they had then and everything was fine, I'm sure today's technology will be able to do it even better. I pray everything turns out ok for your little darling.

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