Cranio Surgery Support Page
 

Information, help, and support for parents of Craniosynostosis
 

 

 
Shades of St. Louis

Click here to see Sydney's Surgery Diary and Pictures

   

What is craniosynostosis?

Definition from Medterms.com: Premature fusion of the cranial sutures (the fibrous joints between the bones of the skull) in an infant, preventing normal growth of the baby's head. Craniosynostosis involving some but not all of the sutures causes an abnormally shaped skull

 It is a condition that some children are born with or later develop.  To better understand craniosynostosis, it is helpful to know that our skulls are not made up of one single "bowl" of bone.  Instead, different bones that fit together like a jigsaw puzzle make up the skull. The areas where the bones meet one another are called sutures.  As a baby grows the brain rapidly increases in size.  According to current theories of growth, the growing brain pushing on the bones of the skull causes the skull bones to expand or grow. When one of these sutures is fused too early, it is called craniosynostosis.  There will be no growth in this area.  This inability to grow in one area may lead to overgrowth in another area.  This results in an abnormally shaped skull. (taken from www.ccakids.com)

 

Why do we have this web site?

Well, when we went looking for information on our daughter's condition, we found some information, but mostly it was definitions and pictures... What we were looking for was a real account of a parents trip through the surgery and someone we could ask questions.  Sydney's surgeon (Dr. Jeffery Marsh) and his team seemed to be more helpful than other groups that we have heard about since, and we were able to ask question after question and get all the answers.

Since her surgery, we have found that not everyone knows what questions to ask... it IS a scary proposition after all.  We have also found that other parents of Cranio kids have found our account of Sydney's experience very helpful and many have talked to my wife and myself (mostly my wife) about our experience.

Anyway, we wanted to have a spot that would not only show parents our experience, but also share the 'good' informational web pages that we came across in our late night cranio searches...

  

Do we support or have information on other craniofacial conditions?

No, we feel that we can only give information and support on what we have experienced and researched, and that is craniosynostosis and it's many versions.  We also do not try and give out

 

 

Where are we and how can you contact us?

We are located in St. Louis, MO, although we have talked with cranio families all around the country.  If you have any questions, we would be happy to answer everything we can or tell you more about our family's story.  Email Michelle at michelle@craniosupport.net.