Unilateral coronal synostosis @ 16 months

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Our little girl had a misshapen head at birth...since my son did too and corrected itself I didn't think that much about it. My pediatrician is a DO who recommended osteopathic manipulation for the misshapen head. At no point did she mention it could have been an early fusion of her skull sutures. When I mentioned that my little girl's head does not seem to have improved by 12 months as it did for my son she reluctantly mentioned if you want to go see a neurologist to make sure she's ok.

I love my pediatrician she has always been great with any illness and seeing my kids anytime...but her reluctance made me feel that I was second guessing her and I don't know what I'm talking about. Then when my friend who is a pediatrician mentioned we should bring our little girl to see a neurosurgeon to rule out an early fusion of the cranio suture. I thought WTF? Why didn't my pediatrician at least tell me that was a possibility?!?

The first neurosurgeon we saw said there wasn't any ICP so any surgery we did would be cosmetic and will monitor her every 6 months...really? He didn't even schedule a CT to confirm the diagnosis. Then I started to notice the little things with her eyes not being able to focus. She started to walk a lot later than my son. Even as she walked she tended to fall a lot (not sure if that is part of the cranio or just she's taking longer to master the walking skill). And at her 15 month check up, her brain was measuring at the 50%tile. When I talked to my friend the pediatrician he mentioned to get a second opinion and at least get a diagnostic work up to make sure that my little girl really did not need surgery.

We went to Children's Hospital of Philadelphia and saw Dr. Barlett. He said a lot of the research indicated ICP builds up and there might be a lot of side effects but ultimately we have to make the decision if we want to go ahead with the procedure. On one hand I don't want to crack my baby's skull open...but then I'm not willing to wait and if something that happened later that could have been corrected now then I cannot live with myself and I didn't give my little girl the best chance at life with a procedure that may save her from vision, developmental issues later on.

It's been an emotional few months and I'm so glad I found this site to read your journey and advice. Please email and blogs and additional stories / pictures to show me what to expect. I still can't hold it together some days but I wouldn't be human if this did not affect me.
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