Craniosynostosis

Three of my four children were born with non-syndromic craniosynostosis. Craniosynostosis is the premature fusing of one or more skull sutures. All three of my cranio kids had only one suture close prematurely, however two of the three had an additional suture fuse sooner than it should have. Each of our kids underwent an endoscopic craniectemony at Massachusetts General Hospital when they were only a few weeks old. The surgeries were followed with helmet therapy. Despite this, our second daughter needed a full cranio-facial reconstruction when she was 18 months old. These were uncertain and frightening times for us as parents, but all of our children are healthy and otherwise completely normal. Praise God!

When you first hear things phrases like "birth defect" and "surgery" thrown around about your newborn baby, it can be extremely frightening.  But if your child has recently been diagnosed with craniosynostosis, I want to encourage you to fear not!

An endoscopic cranial strip is a simple procedure for most pediatric neurosurgeons. The endoscopic surgery usually takes from 2-4 hours and involves an overnight stay in the PICU. Each of our babies were able to be taken home the hospital the following day.

Below are some of my posts on our experiences with craniosynostosis along with some cranio organizations and charities.

Hannah's endoscopic surgery: here here, here.

Abby's endoscopic surgery here and here and here
Abby's "big" surgery here, here.


Cranio Care Bears
Craniosynostosis support and encouragement through loving care packages.

Cranio Angel Network
Charity providing flower headbands and pirate hats for boys.

FACES
National Craniofacial Association

Children's Craniofacial Association
For children born with syndromic craniosynostosis.

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