October 2, 2007 we awoke to find that our two and a half year old son, Rylee, had passed away in the middle of the night. We called 911.
The police, ambulance, fire department and coroner arrived. I cannot tell you how many people were in our house, or how many times we had to recount our story. The police asked why our seizure alarm did not go off. I did not know. We had heard nothing on either the baby monitor or the alarm. I asked the coroner to consider SUDEP as a possible cause of death having learnt, through my own research on the Internet, of its under-reporting on death certificates. No doctor had mentioned SUDEP to me. Due to Rylee’s age, I did not view him as a candidate. I never thought it would happen to us.
When the police left, I realized they had removed some items from the house (bedding, alarm, baby monitor and medication). This felt like a violation and added further distress as the requirements of an investigation were not explained to me.
While Rylee was alive, we made numerous trips to different emergency rooms. He suffered from 4 different types of seizures, was having about 2 grand mal seizures per day and was on 3 different medications. Doctors would ask if we wanted our son admitted and what tests we wanted run. I felt terrified; the medical professionals did not seem to know what to do with us and how to help manage our son’s epilepsy. I became consumed with trying to learn as much as I could to try and advocate for my son.
SUDEP was listed as the cause of death. But, we had to wait 28 months to get the autopsy report as deaths of children under 5 must first undergo Paediatric Death Review Committee investigation prior to releasing results to the family.
In retrospect, I would advise people to get as much information as they can - to push for specialists and appropriate testing. Rylee was labelled by the paediatric neurologist as having severe epilepsy, but the doctor neither mentioned SUDEP nor referred us to an epileptologist.
I wonder now, what justifies a referral to this kind of specialist? I would strongly suggest that persons with epilepsy and their families educate themselves on all things related to epilepsy, ask questions, demand needs be met and, above all, do not give up.