At 23 years of age, Sam Nation was an active, accomplished and independent young man who was making plans to study environmental science at university and who had a promising life in front of him. Tragically, his young life ended abruptly and without warning in January this year, due to a little-known condition associated with Sam’s epilepsy, called Sudden Unexpected Death in Epilepsy.

Sam leaves behind two devastated parents who are left trying to come to terms with the sudden and unimaginable loss of their only son.

“Sam was meant to go away with friends for the weekend and I was going up to Sydney. I saw him the day before, gave him a hug, told him I loved him and said have a good weekend,” said Rheana Nation, Sam’s mother.

“The next day I tried to contact him, with no success. I tried again that night, no success. This wasn’t unusual as Sam was living independently and had been for about six months. The next day we still couldn’t get in contact with him. My husband and Sam’s dad, Paul, went to his home and found him.

“That was incredibly traumatic for Paul. The police were called and Paul had to contact me in Sydney to tell me what had happened.

“Because Sam was a young person at 23, and there were no visible signs of why this could occur, he was considered in a high-risk category so the coroner did an autopsy. They found he was fit and healthy other than having epilepsy and believe he passed away due to a massive seizure event. Sam’s death was classified as SUDEP.”

Sudden Unexpected Death in Epilepsy (SUDEP) is when an otherwise healthy person with epilepsy dies suddenly and prematurely and no reason for death is found. This does not include those who die in status epilepticus (when seizures occur in close succession, or the person doesn’t recover in between) and those who die from a seizure-related accident.

Among Australia’s 270,000 people living with epilepsy, it is estimated there are approximately 300 SUDEP-related deaths each year. Most, but not all, cases of SUDEP occur during or immediately after a seizure. Researchers are unsure what causes SUDEP but are currently investigating a variety of possibilities, such as respiratory (breathing) or cardiac (heart) dysfunction.

Rheana says it’s important that people with epilepsy, and the families who care for them, are told about SUDEP and understand that it’s a possibility. Now in a unique position of working at the Epilepsy Foundation and having in-depth knowledge, this wasn’t always the case.

“Sam was diagnosed with epilepsy at the age of 12 and he died at 23. As a family, no one spoke to us about SUDEP, nobody raised it, from his first diagnosis at 12 right through. When we were living in the US it wasn’t raised by his neurologist, and it wasn’t raised at any stage when we transitioned Sam into adult care.

“It was only when I joined the Epilepsy Foundation that I found out about SUDEP in my role as an epilepsy advisor.

“A lot of the information that I now have about minimising the risk, we had put in place without realising the importance of it. But once I knew about SUDEP we then tried to lower the risk even more.

“Medication is a big one. As Sam became older, and taking his medication became his responsibility, he had to get used to the routine of taking it. He was a big gamer and he’d get caught up in the game, so we had three alarms set on his phone within the hour window he was supposed to take it.

“We tried to make sure Sam had a strict sleep routine, which got harder as he got older – he was independent and I think we need to allow our children to be independent – so we were reiterating the importance of a good sleep routine, going to bed as early as possible, eating well.

“Since Sam’s first diagnosis, we made it known he wouldn’t be able to drink and would probably not be able to get his driver’s licence. He was never a drinker and when he did get his licence he was usually the designated driver.”

Rheana said it’s critical that doctors raise the possibility of SUDEP with their patients, so that they’re informed and better able to manage the risk.

“From a mother’s perspective, I think doctors and specialists, in particular, need to not be afraid to talk about death, and they have a responsibility to talk about it in those cases where they think it’s a possibility.

“That’s about looking at the type of seizures people are having and their lifestyle. When it’s the reality of the diagnosis and the possibility is death, doctors have a duty of care to ensure that those people know exactly how they can work towards lowering the risk.

“Even if doctors don’t mention it when the person is first diagnosed, I believe they have a duty of care to come back and talk about it later. It’s about sitting in the moment and being with your patient, because anything can happen. It’s so important to let people know about SUDEP, especially as young patients become independent; it’s not just the parents’ responsibility but the clinical team around that person, as they cross over into the adult stream.

“You can’t act on something if you don’t know about it. There’s the devastation of the person passing away due to SUDEP; you can’t take away that grief but if you knew all the things you’d done to lower the risk of SUDEP, if you have the information, and the person with epilepsy had the information, then it reduces a lot of the ‘what-ifs’ that you tend to go through.”

“I think it’s such a Western thing that talking about death is so significantly complex for people and it shouldn’t be,” Rheana said.

She said there are added complexities when the child transitions into the adult health system.

“When a parent loses that part of their responsibility because the child is an adult and they don’t want you in the room, it’s important that the specialist is really honest with the patient, especially those in the 17 to 25 age group, as they are becoming independent.

“When Sam transferred to adult care – we loved his neurologist, he was amazing – he may have discussed SUDEP with Sam, but Sam never shared that with us, and that’s his right.

“Sam wasn’t out every night, not taking his meds. He was in that small percentage where his seizures were under control, he was in the right age bracket and it just happened.

“He was living independently, he had a full-time job with the Victoria Police as a public servant and he had decided he was going to leave that job and go back to study, to his first love of environmental science. His life was good.

“Then Sam passed away and we found out a week later that he had been accepted into his course.

“I want to talk about Sam, remember him for the remarkable young man he was, and to use our experience to talk about how important it is to be aware of SUDEP, that you can lower the risk of SUDEP, but even if you’re taking your medication and doing all the right things, SUDEP is still a possibility – it can still happen. People need to be aware.