You can follow Aurora's Journey with Dravet Syndrome on Facebook. Please join our fight against this devastating disorder. Awareness is critical to one day finding a cure. If you have any questions, feel free to ask. Thank you all <3
Catrina knows the details a little bit more, so here's her take on Aurora's story:
Aurora was a healthy, happy baby born on Leap Day - February 29th, 2016.
Her first seizure happened a few days after turning 9 months old. She cried out in her sleep and I found her staring off and convulsing. Mike called 911 and we were rushed to the ER. That seizure lasted 15 minutes. She did not have a fever so we were sent home several hours later with the hope that it was a fluke incident and comforting statistics that seizures are fairly common with infants. Less than 24 hours later, Aurora had a cluster of seizures following a warm bath. This time the ER ran several tests over the course of a few days - a 30 hour video EEG, bloodwork, spinal tap, sedated MRI, cultures. All results were normal and so we were sent home again with hope that this was just an episode that she would grow out of.
Christmas came and went, as did New Years. Life went back to normal and it seemed likely that Aurora had in fact grown out of them. Then at the end of January, she had another seizure in her sleep. This one was 30 minutes long. All the tests were repeated, all the results were the same. We made a follow-up appointment to see a neurologist in a few weeks and went home.
Early the next morning, one month before Aurora's 1st birthday, I woke up again to find my baby seizing. This seizure would not stop. The EMTs gave as much rescue medicine as they safely could. When we arrived at the ER, doctors and nurses moved us into a larger room so they could have enough room to help Aurora. The medicines were not working. After an hour and several failed medicines, they called in an anesthesiologist to medically induce a coma. She spent the majority of the day sedated and intubated in the PICU (Pediatric Intensive Care Unit). The doctors came and spoke to Mike and I about doing a genetic test to hopefully rule out any conditions that could be causing these seizures. The results would take 8-10 weeks to get back. We were told to pray these came back clear too as that meant there was a higher chance she could grow out of it at some point. She had some breathing problems after they removed the breathing tube, so we spent several days in PICU, before being transferred to the neuro floor for a day. Aurora also started on a daily anti-seizure medicine.
I read anything I could on genetic seizure conditions. I googled symptoms and tests and found there is a spectrum of genetic mutation disorders. The worst case scenario, the one we prayed she did not have, was Dravet Syndrome. The main red flags for Dravet are: seizures lasting more than 10 minutes, seizures occurring on one side of the body, and seizures triggered by a warm water bath in infants. She had all of these.
The next couple of weeks held Aurora's 1st birthday and we had the best time celebrating with family and friends!
At the end of March, I received a phone call from the neurologist's office that they had some of the results back and she did have some sort of genetic mutation that could be causing her seizures. The neurologist referred me to a genetic epileptologist that would schedule an appointment and be able to tell us the results. We never got to have that appointment.
Our world changed April 7th. She had another seizure that lasted almost 20 minutes. Aurora was admitted to the neuro floor once again. The nurse practioner came in and explained the plan for this stay to Mike and I and my mom. We were going over the medical history and she realized that we only knew that Aurora had a mutation, but that we didn't know the official diagnosis. I explained that we had stopped googling for answers after everything kept pointing to really severe, life-threatening disorders. And then she said, "So you've heard of Dravet Syndrome.... I'm sorry, but that is what Aurora has." My heart shattered. I'm sure there are shards of it still in that hospital room.
Since then, we've learned so much about Dravet Syndrome. We've also had several more trips to the ER for seizures. We've established and altered a rescue plan for her. We've had her tested for developmental delays (all clear currently). We've changed medicine doses. We've joined support groups. Through all of this, we've learned that minutes matter. The minutes she is having a seizure and the minutes that she isn't. She may have a seizure that is just a few minutes long and bounce right out of, or she may have clusters of them that last 20-30 minutes and leave her mind and body exhausted. We never know when they will happen or how severe it will be.
I appreciate you taking the time to read about our life with Dravet. Please follow Aurora's journey on Facebook here.
For more information on Dravet Syndrome, click here.