Craniosynostosis

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  • #10428785
    Profile photo of i-am-pregnant
    i-am-pregnant
    Keymaster

    Craniosynostosis

    #10428786
    Profile photo of mumtomaizie
    mumtomaizie
    Member

    hi my little girl was born with this condition, would like to hear from familys who have children with this.

    #10428787

    Hi,
    My son also had cranio (metopic) and had surgery about 3-1/2 years ago. Anyone is welcome to contact me. There’s lots of support out there for families going thru this!

    #10428788
    Profile photo of 3rdXMommy
    3rdXMommy
    Participant

    My son when through surgery to have his skull corrected on June 17. I am more than willing to share any information or answer any questions about the procedure.

    #10428789
    Profile photo of 3rdtimemama80
    3rdtimemama80
    Participant

    My oldest daughter was born with craniosynostosis. Her soft spot closed in utero causing her head to elongate in the back. The specialists stated that other than performing surgery for cosmetic purposes only…there would be no danger with her continuing through life normally. The back of her head curves out a little more than normal, but she has long hair which makes it barely noticible. She does not experience headaches or any side effects what so ever. She excels in school , speaks 2 languages fluently and has been deemed gifted by all of her teachers=)

    #10428790
    Profile photo of flame3
    flame3
    Member

    Hi, my youngest son had metopic synestosis. He had surgery at 10 months. He had anpther when he was 3, the openings they created were not closing. Now we have ear infections, asthma. We are going in November for genetic testing. hoping our new baby will not have to go thru all of this!! Good luck ladies, feel free to ask me anything.

    #10428791
    Profile photo of rde79
    rde79
    Member

    Hi, My daughter was born with cranio as well. She had the endo scopic surgery at 11 weeks of age. Was in the helmet for 13 months after surgery and thought that did the trick. Now we are facing the CVR surgery in December. She has had some delays in fine motor skills and has left side weakness. If anyone has any questions. Feel free to contact me. 🙂

    #10428792
    Profile photo of i-am-pregnant
    i-am-pregnant
    Keymaster

    my youngest was born with coronal synostosis (saethre-chotzen syndrome).
    we are waiting for tests on our other children.
    my daughter had her skull reconstruction at 1 yrs old in feb 11.
    the results are amazing & im well chuffed..im now pregnant with our 6th baby & we have to wait till my 28 weeks scan to see if this baby has it {:0( our chances went from 1in4 to 50/50.
    my husband has 3 soft spots never closed & my daughter has a large soft in the same place that will also never close {:0( the surgeons actually halfed it when they did the surgery.
    this is something i will never get over & with this surprise pregnancy im scared we’ll have to face surgery again {:0(.
    im here for anyone who wants to ask me anything or who wishes to talk about anything.
    take care all xxx

    #10428793
    Profile photo of i-am-pregnant
    i-am-pregnant
    Keymaster

    The use of certain drugs has been linked to craniosynostosis and other birth defects. This is a great resource: http://www.yourlawyer.com/topics/overview/craniosynostosis-side-effects-birth-defects-lawsuit

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