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Clara's Craniosynostosis:

What In the World is That?


My daughter was diagnosed with a condition called craniosynostosis when she was 6 months old. I'll explain with some help from google: "Craniosynostosis is a condition in which one or more of the sutures close too early, causing problems with normal brain and skull growth. Premature closure of the sutures may also cause the pressure inside of the head to increase and the skull or facial bones to change from a normal, symmetrical appearance." 

Clara's metopic and squamous sutures are closed and her skull has stopped growing. She had surgery to correct this problem on November 28, which explains my absence for the last month. Although she is recovering nicely, this journey is far from over. After making cuts in her skull to separate the bone, they installed devices called distractors (those antenna-like things you see poking out of her head). What the distractors will do is slowly move her skull over time as my husband and I turn them 3 times a day. It sounds scary and very serious but we are taking it one day at a time. Clara doesn't even seem to notice them.  


We had a very good experience at Dell Children's Hospital in Austin even though we had to stay a week. They were so accommodating and made sure our stay was as comfortable as possible. It's tough having an infant in the hospital. There were lots of activities for the kids, gardens to walk through, and lots of free toys and books. One of the ladies from Child Life Services made our daughter a teddy bear with distractors and a scar that's the same zig-zag shape as hers!   


With lots of support from family and friends, we feel confident we will make it through this difficult time. We will be turning her distractors 3 times a day every day for 20-30 days. Then we will have a healing period of about 2 months to allow her skull to grow in where we pulled the bone apart and then she will have another minor surgery to get the discrators removed once the doctors have determined that she has enough room. Her skull no longer grows on it's own, so by the time were finished her skull will need to be almost the circumference of an adult. She may need another surgery to correct her metopic suture, but time will tell. 

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