WHAT IS CRANIOSYNOSTOSIS???
Craniosynostosis (otherwise known as Cranio for short) is the premature closure of sutures in a baby's skull. Normally, babies are born with soft spots in various places on their head. These are spaces in the skull to allow the baby's brain room to grow. In a baby with Craniosynostosis, one or sometimes multiple sutures close and fuse early, sometimes causing ridging. This can lead to INTRACRANIAL PRESSURE. Intracranial pressure can cause headaches, nausea or vomiting, vision problems, hearing problems, seizures, and in extreme cases even death.
HOW COMMON IS CRANIOSYNOSTOSIS???
Cranio is quite rare. It affects 1 in 2,000 babies born every year. This means that only about 350,000 people worldwide have been born with it.
IS CRANIOSYNOSTOSIS HEREDITARY???
Cranio can be hereditary, but most often that is not the case. Cranio can be isolated (non-syndromatic, non-hereditary), or it can be hereditary (sometimes non-syndromatic, but most of the time it is associated with a syndrome). There are over 150 syndromes linked to Craniosynostosis. Only about 5% of all Cranio cases are syndrome related.
WHAT DOES A CRANIO BABY LOOK LIKE???
Abnormal head shape is one of the most common signs of cranio. Along with ridging, flat spots on the head, and ears that lay flat against the head. Not all babies that have flat spots have Cranio, though. The Back to Sleep campaign is causing some babies to develop plagiocephaly. Plagiocephaly is different than Cranio in the sense that the sutures are still open and the flatness can be corrected without surgery.
WHAT CAN I DO IF I SUSPECT MY BABY HAS CRANIO???
Talk to your baby's pediatrician. He/She will check for soft spots. If symptoms do not improve within a few months, ask the doctor to recheck. If you have doubts, GET A SECOND OPINION. Cranio is very widely undiagnosed/misdiagnosed. Tests that will confirm cranio are: X-Ray (least accurate), CT Scan, or MRI.
WHERE CAN I GO TO FIND SUPPORT?
Facebook has a good Cranio support group, and there are several non-profit organizations that you can get more information from.
Facebook Support Group: Our Cranio Circle
Children's Craniofacial Association
Cranio Angels Network
Cranio Care Bears
Each nonprofit has a Facebook Page as well
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