Right after my son Emmett’s 1st birthday, he had his first tonic clonic seizure (aka grand mal). This is the type of seizure typically portrayed in movies: a loss of consciousness, falling to the floor, foaming at the mouth, and big, violent convulsions. Obviously, it was very terrifying to watch in our 1 year old son for the 1st time. We were told it probably wouldn’t happen again and sent home from the ER. But it did happen again. We pushed for testing and a CT revealed the metopic suture had closed, but the Doctor said that it was normal and nothing to worry about, so we believed them. Emmett continued to have seizures, wasn’t sleeping well, would abruptly lose the ability to stand up, and seemed to be in a lot of pain. When he didn’t get better and the Doctors still didn’t know why, I took his records and started researching everything I could.

I diagnosed our 13 month old son with Craniosynostosis myself before any Doctor would agree with me. We made a referral to a different hospital. He was immediately diagnosed as severe metopic and they scheduled him for a cranial vault reconstruction and frontal orbital advancement as soon as they possibly could. On June 20, 2012, our 15 month old Emmett had surgery. His surgery lasted exactly 7 hours and 26 minutes and as an experienced distance runner, I ran on a treadmill in the hospital the entire 7 hours and 26 minutes. I coordinated a virtual event to spread the word about Craniosynostosis and was joined by over 1,000 people all over the world. I did it because I didn’t want other children to go undiagnosed so long or parents that have to figure it out themselves. I didn’t want other families to be failed by multiple specialists that don’t have a clue what Craniosynostosis is.

Surgery went well and we were thrilled with the outcome. Our surgeon told us that when they opened him up, his whole brain relaxed. Emmett’s eyes remained swollen shut for 8 days following the surgery. It was hard to bring home a temporarily blind baby because suddenly our home was so unsafe. After his eyes opened up, we had a whole new boy. There was no hitting his head up against the wall, no screaming while holding his head, and fewer sleepless nights.

I know it sounds strange, but we are so grateful for his first seizure, because it led us to Craniosynostosis. And we are grateful for Craniosynostosis because it led us to a whole host of things that we may not have known about. Emmett has numerous other (some serious) health issues that would have gone unnoticed without this diagnosis first.