SUDEPAware

How can one adequately describe one’s son who is no longer living? In my case, I have come to the conclusion that it is impossible to do ... as his 25 years cannot be condensed into a few words.

Chris Hayduk-Costa was my first born. He was an extraordinary, genuine, gifted young man, who had a spark for life, a twinkle in his eye, a love and dedication for his family and friends, an enormous passion for music, a quick wit, a positive attitude and a soft spot in his heart for pets.

Chris had faced a number of health challenges throughout his short life, the most serious being cancer at the age of 14 years but he did not let those aspects define who he was. I do believe that Chris possessed some inner wisdom about living in the moment, which I am sure was the result of his cancer journey.

 

Chris’s diagnosis of epilepsy

As Chris approached his 20th birthday he was diagnosed with partial complex seizures. Chris was understandably upset. He was dealt a pretty lopsided deck of cards with regard to his health and although he tried to keep a positive attitude, it was initially quite difficult. I recall attending the first neurologist appointments with Chris, and the relative non-concern expressed by the neurologist about Chris’s diagnosis. It seemed that his epilepsy was rather benign and all he would have to do is take his medication. There was absolutely no mention of Sudden Unexpected Death in Epilepsy (SUDEP). In dealing with Chris’s reaction to this new health challenge, I tried to be reassuring and reiterated the neurologist’s words. Little did I know at the time.

Because Chris’s new diagnosis coincided with his departure for France (where he would be studying for a year as part of his International Business Degree), the neurologist prescribed an older, predictable anti-epileptic medication, Dilantin (Phenytoin). Once his dosage was refined, Chris did not have any more seizures for five years. It almost felt like he did not have epilepsy.

In 2009, after completing his degree, Chris began working at the Library of Parliament and made the big decision to spread his independent adult wings and move out. Life was unfolding as it should, or so I felt at the time.

In September 2012, Chris had just turned 25. Around that time he had been pretty tired as he had driven a long distance to help a friend move and was burning the candle at both ends. He also had had a stomach upset that may have impacted his ability to take his medication.

We celebrated his birthday with a small intimate family dinner, followed by one with extended family on September 8th, 2012. Chris was in full form and in great spirits.

When he left my home that evening, he gave me a huge Chris hug, and told me how happy he was with everything; his new ‘ultimate bachelor pad’ which he shared with a roommate, his car, he was hopeful about a girl and he was happy about his music. He was playing in a few bands, was performing solos at open mics, and he was excited about another upcoming gig later that September. He was in such a good place. My last conversation with Chris had been by phone, the evening of September 10th, 2012.

 

Sudden Unexpected Death in Epilepsy (SUDEP)

On September 12th, 2012, our world changed forever. That was the day that I received a phone call at work, saying that Chris had not shown up at his office that day or the previous one. They had not heard from him as one would expect in the case of an absence and were understandably concerned.

I tried to contact Chris but to no avail. I started the call out with Chris’s dad Manuel and sister Gab, to determine if anyone else had spoken to him or his roommate. I was hoping that someone would know what was going on and where he was. Manuel and Gab continued to follow up with Chris’s friends while I left work to make my way over to his apartment. It had just been five weeks prior that I had helped Chris move into that very apartment.

The situation made me feel very uneasy, as it was not like Chris to be irresponsible. He would normally have called his work to let them know that he was sick. We learned that Chris’s roommate had not seen Chris since the evening of September 10th, 2012 when they had been watching TV. Because Chris had the master bedroom with an ensuite, his roommate thought nothing of it when he returned home late on September 11th, to see Chris’s bedroom door closed.

Because I did not have a key, when I arrived at the building, Chris’s roommate (who was at work at the time) buzzed me into the lobby. There was no answer at the apartment door so when I subsequently went to the garage and saw Chris’s car, my heart sank. I phoned his roommate at work, and made arrangements to get his key. Once in the apartment, I opened Chris’s bedroom door ever so reluctantly; afraid of what I might find. His bed was empty and the ensuite light was on. I must have imagined that I saw some fog on the bathroom mirror, and thought, “Oh good, he is up and must have just taken a shower”. I called out but there was no answer. I walked to the bathroom door and found him on the floor. He had passed away. I was facing my worst fear. I called 911 which started the parade of police, paramedics and the coroner. Without a doubt I was in shock and was functioning on some autopilot. When the coroner mentioned that she suspected SUDEP, it was the first time that any of us had heard the term. I blurted out something to the effect of, why we, including Chris, were never told about SUDEP. She responded in a question saying, “Why would we tell someone about SUDEP, if there is nothing that can be done about it?”

The last thing that I could have imagined was that his epilepsy would be the cause of his demise. It just did not compute.

Within the first few days, with some of the findings, the coroner’s soft diagnosis of Chris’s death was SUDEP but I have to say that we had difficulty in believing it. It was as though we were expecting another explanation. It just did not make sense to us at all. It appeared that Chris had run out of his Dilantin and had arranged for a refill which had been ready for pick up at the pharmacy a few days prior. Given the time frame for pick up and his previous refill, one could estimate that he may have missed a few doses or perhaps more, but we will never know for sure as the toxicology did not include his Dilantin levels. Chris’s pharmacist kindly provided their records confirming that Chris had to pick up his medication every 30 days and that Chris was systematically late for his pickup each month (meaning he did miss a few doses every month). Nothing had ever happened…until he died. The autopsy confirmed Chris had a tonic-clonic seizure prior. It was his first and only one. I do wonder if Chris went into a withdrawal from the Dilantin that caused the tonic-clonic seizure that then caused his death to SUDEP.

In my search for answers, I learned that although Chris continued to be prescribed Dilantin by his neurologist, he had not been seen by his neurologist for over three years prior to his death.

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Please learn from Chris’s death

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It saddens me and makes me feel so helpless that here in Canada there is little interest in examining and learning from Chris’s death. Our family has participated in a Canadian study regarding informing those with epilepsy about SUDEP, but the studies that have taken the details of Chris’s death were out of the USA and the UK. My sincerest wish is that others can learn from Chris’s death, an opportunity that he did not have.

 

• Awareness and openness about SUDEP with epilepsy patients and/or their families is critical if they are to be fully involved in their health outcomes. Ideally this would be for all and not just those in a high risk group. In addition, this should not be qualified with “but you are not in a high risk group” as most would hear that the information being provided does not apply to them. According to most studies to date, it appears that Chris was not in a high risk group.
   

• Ideally there should be closer medical follow up with those living with epilepsy, especially if there are higher known risks including seizure frequency and age predisposition (20-40 years).
   

• Given that therapeutic non-compliance appears to play a role in the risk of SUDEP, easier access and prescribing larger dispensing quantities would seem appropriate in most cases. In an ideal world, the medical community could partner with the pharmaceutical industry to inform those taking the anti-epileptic medication about the risks and the importance of therapeutic compliance.

 

I truly believe that Chris could be here today had he been informed about SUDEP and the steps to reduce his risk, although we will never know for sure. Nothing can bring him back, but changes for a better future for others can be made.

I miss my wonderful Chris every day. I was privileged to be his mother. I know that he has left a huge hole in the hearts of his sister, father, extended family and friends. All that I can do now is, tell his story in order to help prevent others from dying. I do this in his honour and his memory, as he would have wanted me to.

He was our light, our laughter and our song.

Barb Hayduk
July 2014