Evan Bagley Jones

My name is Kristan Bagley Jones and our journey with epilepsy began in 2009 when my son Evan was 15. I learned a great deal about epilepsy as Evan suffered through nine grand mal seizures over four years, but never about SUDEP (sudden unexpected death in epilepsy) from any of his doctors.

I first learned about SUDEP after his funeral through friends. I do not know why I did not learn about SUDEP from his doctors, all of whom had provided a great deal of compassionate and expert care. Perhaps they thought Evan or I could not handle this information? I do not know the answer to that question, but I know without a doubt in my heart, Evan would have wanted to know about his risks. If he had known about SUDEP, he would not have wanted me to worry - and yet he would have wanted to discuss it with me before he made a decision about how to live his life.

Evan’s Story

Evan lived his life well even though his life was significantly disrupted by seizures. He had to stop playing football, his first athletic passion, but he was able to play lacrosse and basketball.

After his first two seizures, we were told he could not be left alone for six months. We put several strategies into place. Evan had to have the bathroom door open when he was showering. He could not swim alone. When it was time for him to drive, he could not drive for six months after a seizure. He had to take very good care of his health and be consistent with medications that made him sleepy and sluggish. He had to receive a 504 accommodation (which made him feel even more self-conscious), so he could sleep in the morning since his seizures were triggered by sleep deprivation. I had to hire someone who could be home with him in the morning and then drive him to school.

The safety precaution that he hated the most (other than not playing football) was that he had to have a baby monitor in his room while he was sleeping. Despite my calling the baby monitor a “teen” monitor, he hated what it signified: a loss of independence and lack of privacy.

The doctors at Boston Children’s Hospital wanted these strategies in place for six months. I tried my hardest to extend the duration, but when Evan threw the “teen” monitor out his window on the exact day this six-month-period ended, I knew my need to hover had to be contained.

We declared a truce. I could be on the same floor as he was when he showered. He would leave his door open when he slept. He would tell me where he was and with whom. He would answer my texts immediately and he would be vigilant about his medications.

We also agreed that his friends, teachers, and coaches could be told of his seizure disorder and what to do to keep him safe in the event he had a seizure. I must say everyone was extremely supportive and never acted as if he couldn’t live his life to the fullest. I thought these arrangements would save him, but they didn’t. I didn’t know love wasn’t enough to keep Evan safe.

Fast forward to Wednesday, September 4, 2013. I dropped Evan back off at UMass Amherst. He was glad he had made the decision to have a private room. I had concerns about it, but Evan was determined to live by himself. He called me on Thursday to let me know he was really happy that he was in his own room. He said he couldn’t talk for long because he was meeting friends for dinner, but he would call me back.

When I didn’t hear from him by Friday evening, I thought, “Well he’s busy.” When I hadn’t heard back from him Saturday morning, and he hadn’t responded to my call and text, I began to get really concerned. I asked a few of his friends to check on him. On Saturday, September 7, his friend went into his room and found Evan dead on his bed. I will forever feel badly that his friend had to see him that way. I will also always feel grateful that his friends found him and told police he had epilepsy.  

So why am I telling his story?

I know telling his story will not bring him back to me. I know that sharing his story will not make me miss him less, as I will miss him each and every second for each day I have left on earth. I know that knowing about SUDEP would have been really difficult for all of us. I probably would have never slept through the night. I would have begged Evan to live at home. I probably would have been a nervous wreck every minute of the night.

Despite these fears, I know with the utmost certainty that Evan would have wanted to know about SUDEP. I also know that he would not have agreed to live at home or otherwise alter his life. Yet he should have been given the choice to know about SUDEP as he made these decisions. He should have at least been given this information before leaving for college. He should have been able to consider having an emergency back up when he was sleeping. What he did or didn’t do with this information would have been his choice to make.

Once I educated myself about SUDEP, it was clear that Evan meet all of the major criteria. When I received an email from the first neurologist who treated him, to offer her condolences, I wrote back and innocently told her about SUDEP and asked her to include it in her research efforts. After sending this email, I read an article about a discussion between two neurologists where they debated the ethical decision to tell or not tell a patient about SUDEP. I felt very betrayed when I realized that both of his neurologists would have known about SUDEP. And I felt so gullible for believing they didn’t tell Evan because they didn’t know about SUDEP.

#DareTo Say SUDEP So People with Epilepsy Can Make Informed Choices

Although I will always be grateful for the exceptional care Evan received at Boston Children’s Hospital, I deeply regret not having all of the information that could - and should - have been shared by his neurologists. Even though I would have worried more than I already did, I wish I had known about SUDEP. I wish Evan had been given the chance to know about his risks. I know without a doubt that he would not have changed anything in his life, but he deserved to know so that he could make informed choices.

I share this story in honor of my son’s life… and in the hope that other families living with epilepsy will be informed of the risk of SUDEP so they can make informed choices about life decisions.     

I am grateful for the support from the North American SUDEP Registry and the Epilepsy Foundation SUDEP Institute. Their commitment to supporting families, having SUDEP discussed by doctors, and to educating medical examiners is much appreciated.

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