What I am realizing is through this group is that a lot of children are being misdiagnosed and the pediatricians don't know much about this condition. It isn't fairly common but the earlier it is found the better it is for the child. In my research of it 1 in every 2000 children will have craniosynostosis and it is more common in boys than girls. There are many different types of craniosynostosis too. It just depends on where the suture is closed. A simple x-ray can (it doesn't always) show a closed suture and a CT scan can show the closed sutures too.
It really does surprise me to see parents all over the US that are part of this group that have been trying for MONTHS to tell their doctors that their children at least need to be checked for this condition. I was really lucky pertaining to Eli. After he was born the pediatricians and OB doctors kept on reassuring me that there was nothing wrong with him even though one of his eyes opened more than the other. When we got home I was really persistent about it and decided to really study his head shape. I noticed that one side was more pushed forward than the other and made an appointment with my family doctor. Here is where I was lucky, I have medical assistant training. My doctor TRUSTS me 100% and trust not only my intuition but my training in the medical field.
I was so persistent with it and luckily he sent me to Beaumont Hospital in Royal Oak to the Ian Jackson Craniofacial Clinic. They did an x-ray right away before I even had an appointment with a doctor and that confirmed the craniosynostosis. A simple x-ray of his head confirmed it and he was only two weeks old when we started to form a plan for his surgery. Some kids are years old before its diagnosed! YEARS! That blows my mind because not all parents have medical training and not all doctors listen to the parents about it. Heck not all doctors really even know much about craniosynostosis.
Here is the part where I need you. Ready? Listening? Good. I want to start a movement here. I want to start talking to doctors and getting early detection for this condition. I want to start spreading awareness of this condition that is still kind of rare but so important to be caught early. I want to start sending care packages to hospitals to give to the families and the children that have to go through this surgery. I want stuff even for siblings because I know siblings are so important! I was thinking homemade stuffed animals for siblings that have a special saying on them. I want to meet some awesome artist that are willing to donate their time and supplies to paint helmets that some children have to wear after the surgery. I mean I want these kids to have RAD attention getting helmets. When people ask about them I want the helmets to create more awareness.
I want to do all these things but I am missing something important. YOU! I really cannot do this without support. Without people introducing me to pediatricians, without people donating stuff for the care packages, without awesome artist to help. Will you help me? Any little thing helps.
I will admit I knew nothing of craniosynostosis before Eli was diagnosed with it. I just knew there was something not right. If I wouldn't have been so adamant about it, it might still be un-diagnosed. Un-diagnosed craniosynostosis can cause a whole list of problems including death and brain damage from the inter-cranial pressure. So, I will say it again. Will you help me with this?
Peace and Love,
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