craniosynostosis

sexyitaly11 · January 2017

So my LO was born with a very mild case of craniosynostosis. Thankfully all test check out and he is fine just a cosmetic issue now. I'm happy about this news but every so often when I look at him I get a little upset that he has it. Is it normal to feel this way ?

saraeric · February 2017

Will he need to wear a helmet or anything? My younger brother was born with craniosnyostosis about 20 years ago. It was diagnosed until he was about 9 months old. His case was pretty severe and required a couple of surgeries- 1st on at one year old, and other at two years old. We were always told that he'd need another one during his teenage years but that never came to pass. He has a scar that runs from ear to ear but his hair covers it. He's a perfectly normal, intelligent, a little crazy, college junior now. I know it was really tough on my parents at the time but he turned out just fine.

We're not dealing with that, but we're trying to figure out what's causing the mild hearing loss our DS is experiencing. I get really sad sometimes when I think about the struggles he might face and how he can't hear clearly. I think it's totally normal to feel a bit sad when things don't go as we hoped for our LOs. Hang in there.

Wino0920 · February 2017

My son was diagnosed with a mild case at 2. He had to have surgery. We go every year for a check up to make sure everything is ok and he doesn't need anymore surgeries.

You are totally normal for feeling the way you do. I was so sad, angry, etc that he had it. Especially because I didn't want him to feel any pain.

Is he scheduled for surgery?

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