When Amelia was born, doctors noticed a large fontanelle and although they said they didn’t think anything was wrong, they referred us to genetics. I thought her head just looked funny because babies usually do when born naturally. Sure enough, a CT scan at one week confirmed bicoronal craniosynostosis and further DNA testing confirmed Saethre-Chotzen syndrome. This little one had a gene that decided to mutate on its own since neither one of us passed it along. But we were reassured that it was pretty much just a name for what caused the craino and we shouldn’t expect any developmental delays. Sure enough, she has been on target for everything and doesn’t let a little skull surgery slow her down!
After working with our plastic surgeon, we opted for the more invasive surgery and had her bicoronal sutures released. The 6 hour procedure went well and we spent 18 hours in ICU before we were transferred to a regular room. She spent 5 days total in the hospital and she was an amazing trooper.
For those parents about to embark on this journey, the biggest support was other parents on the Facebook site. Seeing kiddos in and out of surgery helped me mentally prepare. I asked questions and saw others going through the same thing. Although we are only one month post-op, I hope our story can provide some peace and comfort to other parents. It gets better and you are not alone.