At 5am, on March 28, 2006, my wife and I woke to a loud crash. Running to our 16 year old son’s room we found him on the floor, wedged between his bed and the nightstand, his lips blue and teeth clenched. He was having a seizure. This was new. Doctors said it might be a one-time event. His second seizure occurred 3 weeks later, then another one 3 days after that. Clearly this was not a one-time event.
We plunged into this, seeking as much information as we could and took him to the Mayo Clinic for a battery of tests. We were told that Eric could lead a long and normal life with epilepsy; there were only 2 areas of concern. Firstly, having a seizure in a dangerous situation (driving, swimming, rock climbing), and secondly, status epilepticus. We learned the harsh realities of epilepsy – there’s no test to show that you have it, and no test to show that you’re cured. You take meds and hope the seizures go away. SUDEP was never raised. Over time the doctors found a mix of meds that seemed to work and after 18 months the seizures appeared to be under control. For the most part they were infrequent and mild. For Eric, they always happened when he was sleeping, and they always woke us up.
On July 9, 2009, I awoke and went into Eric’s room to check on him, as I did every morning. I noticed he was lying half on his bed, half on the floor. The dog was next to him. Eric had died in the middle of the night, on his mother’s and brother’s birthday.
Over the ensuing weeks I tried to cope with the loss of my son, to be there for his brother and mother, and to make some sense of it all. I worked with the coroner to find the cause of death. Toxicology reports indicated his meds were in the therapeutic range. While reading an article about epilepsy it hit me: Eric had died from SUDEP. I told the coroner that unless he could prove otherwise, I wanted Eric’s death recorded as SUDEP. As a father, I had to tell the coroner my son’s cause of death. When I explained SUDEP to him he said ‘Oh, we’ve had 3 or 4 similar cases in the past year’. Clearly, SUDEP is vastly under-reported.
I expressed my frustration about the lack of SUDEP awareness to my primary physician, an ER doctor, also involved in Eric’s treatment. He replied that he didn’t know about SUDEP until I raised it. Comparing SUDEP with SIDS was interesting and frustrating – they are similar, striking seemingly healthy people, leaving no evidence after the fact, and there is nothing that can be done to prevent them. SIDS is widely known, while most doctors who are not neurologists have never heard of SUDEP. Yet in the US, SUDEP kills twice as many people as SIDS.
If I had been made aware of SUDEP could I have saved Eric’s life? Possibly yes, possibly no. But without being told I wasn’t given the chance.
It all starts with awareness.
Global Conversation 2011