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Craniosynostosis
  • PurpleFlowersPurpleFlowers
    Posts: 5,646Member
    Has anybodys child been diagnosed with this? Just curious. My 11 year old had it and had surgery at 7 months old.
    Stay away from my chocolate and nobody gets hurt!

    I think I like who I am becoming...
  • belle
    Posts: 46Member
    I've never heard of it. What is it? I hope your little one has a full and speedy recovery!!
  • PurpleFlowersPurpleFlowers
    Posts: 5,646Member
    In a nutshell, it's when the baby is born with the "soft spot" closed. If thats the case, the babys brain doesnt have room to grow and the skull is misshapen. It takes major surgery to correct and it can also cause developmental delays. It's actually pretty rare that's why I posted about it. I was curious if anyone else's child had it.
    Stay away from my chocolate and nobody gets hurt!

    I think I like who I am becoming...
  • Kitten
    Posts: 87Member
    I'm not entirely sure what the diagnosis was and my parents don't remember the word, but my skull was fused when I was born. My mom said it could have been something like this or all of the things they had her on to keep me alive when she was pregnant. She had had five miscarriages in the five years between my sister and I, so when they found out about me they did absolutely everything they could to prevent it from happening again. She went through hell to have me. During my first visit to the pediatrician the doctor noticed something was wrong with my head - she and my dad actually had a huge argument about it. She referred my parents to the utterly awesome Dr. Kanev and I had a craniotomy at three months old.
  • PurpleFlowersPurpleFlowers
    Posts: 5,646Member
    Yep, thats what it was.
    Stay away from my chocolate and nobody gets hurt!

    I think I like who I am becoming...
  • luckymama
    Posts: 94Member
    This thread made me start an account to comment! My dr is watching my 8 month old son for this right now. His spot is really tiny and I'm so scared.
  • PurpleFlowersPurpleFlowers
    Posts: 5,646Member
    @luckymama just to let you know, my son is now 11 and is perfectly normal. He had some speech delays but that was it. I was freaking out when my son was diagnosed too. The only way you'd know anything was ever wrong with my son is that he has scars on his head...but his hair covers them for the most part. If you have any questions, feel free to ask.
    Stay away from my chocolate and nobody gets hurt!

    I think I like who I am becoming...
  • luckymama
    Posts: 94Member
    Thank you. How did they first know he had it? My baby seems to be hitting milestones ok, and I really don't think anything else is "wrong", just that they're watching the skull doesn't fuse too early. I'm so glad your son is healthy. Having your baby have surgery on their skull must have been so awful. When are we out of the woods? 18 months?
  • PurpleFlowersPurpleFlowers
    Posts: 5,646Member
    Is his head oddly shaped? I would think that if they are just watching him then its probably ok. They told me that surgery needs to be done before a year. I dont know if that was just our doctors or a general rule though. Yes surgery on an infant is super scary... Especially a 7 hour one
    Stay away from my chocolate and nobody gets hurt!

    I think I like who I am becoming...
  • luckymama
    Posts: 94Member
    Thank you so much for posting on this. I feel less anxious now! My son's head isn't oddly shaped yet and our pediatrician wants to see him at one year. I can't imagine what you went through. Thanks for helping me :)
  • PurpleFlowersPurpleFlowers
    Posts: 5,646Member
    @luckymama, I dont know if you're still on the boards or not but I was wondering how your son is doing?
    Stay away from my chocolate and nobody gets hurt!

    I think I like who I am becoming...
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