This holiday season, my husband and I are extra thankful for the continued recovery of our daughter, Clara. She is undergoing treatment for her condition called Craniosynostosis.
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 have closed and her skull is no longer growing on its own. She had surgery to install distractors (those antennae-like things on her head) to slowly make her skull grow over a 30 day period. This way, she can grow her own bone rather than getting a bone graft. Modern medicine is amazing! My husband and I do have to turn them ourselves using a special tool 3 times a day, every day.
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 its own, so by the time we're 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. She will be a totally normal kid and adult aside from the yearly doctors visits to make sure her skull is looking good.
You can find out more about craniosynostosis and learn how to help other families at https://craniocarebears.org/