My 2nd daughter was born with this. Her Occipital suture as fused 1 mm at birth. We noticed it only minutes after birth. I remember asking the doctor "did she break her nose?" They looked all over her and told me it was likely Positional damage. That it would go away in a month or two. When looking at her straight on you could tell her whole right side was shifted downward. There was a distinct line almost running down the middle of her face. So at her 2 month check up when things still werent looking correct and now her eyes were kind of googly. I made them look hard at her. Finally the Pediatrician said well she could have skull fusion but you cant go for CAT scan till shes 6 months anyway. So for that period of time I did what I could to educate myself hoping for the best. Though her face and forehead got more and more distorted. At 6 months they sent me to a Childrens Hospital where she had MRI and a CAT. They found that her skull was fused about a 1mm over the eye suture. So she would have to have surgery to cut it open and full re-constructive surgery as soon as possible. It was a 4 hour ordeal that I will NEVER want to go through again. The recovery was more painful and gruesome than anything. No one wants to see a 6 month old baby girt with a Frankenstein scar on there scalp and a head the size of a melon. Heartbreaking. She did recover very well, and did awesome with the Physical Therapy for the Torticullus that developed because of her eye placement. She is about 98% done with that. She NOW however looks to have Strabismus, or a lazy eye. So now its off to another specialist to see if we can get that corrected as well. SO the question is , if you have a child or had a child, with this how did they turn out. How long did it take their faces to re-align correctly? Hers is almost there but you can see a marked slope in her forehead and her right eye seems more open and she favors looking with that eye. The "hardware" they use to put on her forehead again after the surgery is still noticeable under the skin. How long did it take you kids to dissolve and what did they tell you? So were you pleased with the result? and by the way anyone with questions about it feel free to ask.
I am sorry that I do not have any advice, but thank you for sharing your story and I pray that you find the answers you are looking for! Good for you for pushing the docs and being her advocate, I am sure she will be just fine with a mommy like you looking out for her!
I don't know how much this would help but, I don't have a child with it, but I have a friend from high school that thei son had it. He had sugery to correct it and he just turned a year recently and he is a beautiful little boy. You would never know anything was wrong in the first place! I wish you well, I know this is so difficult for you.
I can't help with the symptom, either, but my daughter has Strabismus and is far sighted. We caught it when she was three years old, when she started wearing glasses. She sees a Pediatric Opthamologist, a specialist. Usually they do surgery on the eye(s), but we opted for her to do a computer program instead. She hated it (she did it when she was about 9 years old), because it really hurt her eyes to do it (it retrains them through computer games, sort of like an old atari game). The computer game worked!! Her Strabismus has been corrected on its own.
Oh, and she's now 11 and her eyes are getting better! Hope that means she'll outgrow needing her glasses, which can happen with people who are far sighted, I guess (wish it would happen for those of us who are near sighted...).
Glad to hear your little one's surgery has gone well, and I pray that everything else in the future goes just as well.
i don't have any advice but i googled it and theres a website Craniosynostosis.com and it has before and after pics showing how the kids changes by pics every few months. I'm sorry you and your family had to experience that
