Unexplained epilepsy death: A son without a dad

Lucas, 2, is just one of many New Zealanders to lose a loved one to Sudden Unexplained Death in Epilepsy – the subject of this week’s major coronial inquest.

A little boy walks to the fridge, reaches up to grab the magnet with a photo of his papa and tootles around the house holding it to his heart.

“Then, he looks at me and says ‘where’s papa?’,” Nadia Jooste tells the Herald about her son Lucas.

“It is so hard, how do you explain to a two-and-half-year-old that your papa is here in your heart but not here physically. How do you keep telling him that until it sinks in and makes sense to him?,” Jooste said.

Photos of his dad Andre Maddock is all Lucas has.

At 3am on Tuesday December 16 last year, Lucas, just 1-year-old at the time, woke crying.

Five hours earlier, while Lucas was sleeping, his “role model and the joy of his life” dropped dead at age 31, without warning.

Now, nearly a year on, it’s not uncommon for the wee boy to keep that magnet close, to talk to it and to show it his toys.

It’s also not uncommon for him to take two Turkish delights,”one is for papa” he tells his mum. It was his dad’s favourite chocolate.

On Father’s Day at kindy, Lucas refused to go inside because his dad used to be the one who dropped him off. When the toddler finally did, he was met with a tree filled with photos of other kids and their dads and his faced dropped, Jooste said.

Again, Lucas turned to his mum and said “where’s papa?”.

“Even though he is so tiny, he knows there is something missing,” Jooste said.

Family blame Pharmac drug switch

Jooste is angry, frustrated and heartbroken because she believes the love of her life’s death could have been avoided if the brand of his anti-seizure medication had not been switched.

For eight months, Maddock didn’t get any seizures, Jooste said.

Then, without his GP’s knowledge the brand of his medication switched to a generic version known as Logem. Jooste said that’s when his health began to go downhill.

The brand switch was a move by New Zealand’s drug buying agency Pharmac to cut costs, one its officials said would be just as effective.

Though the country’s Medicine Safety Authority, MedSafe, advised against the move.

Maddock is one of the six unexplained epilepsy deaths being investigated in this week’s unusual coronial inquest.

The issue is clouded by the fact Sudden Unexpected Death in Epilepsy (Sudep) affects one in 1000 young adults (aged 20-45), where a cause of death cannot be found.

MedSafe has stressed anyone taking anti-epilepsy medication is to keep taking it and if they have concerns to talk to their doctor.

Today, Jooste was one of the final witnesses to share her story with Chief Coroner Judge Deborah Marshall at Auckland District Court before Pharmac – New Zealand’s drug buying agency – will give its response in February next year.

A Pharmac spokeswoman said representatives of the agency were scheduled to give evidence in late February 2021, so it was not appropriate to comment during the proceedings.

A son without a dad:

Meanwhile, Lucas learns to live without a dad.

Jooste said the bond between them was like no other and to this day Lucas prefers male attention around him because Maddock was so present with him.

“They were identical, even the way they slept was the same.”

“They would have so much fun together, always laughing and playing games.”

The solo mum said she is now her son’s mum and dad.

“I have to fill that space and it sucks. I don’t want to fill the space, I want him here.”

“Lucas loves going to the swings and of course Andre, like the big child he is, used to get on the playground with him and now his mum has to do it, but it’s okay because it keeps me going.”

The last moment Lucas had with his dad was bedtime cuddles filled with laughter.

“He kissed him goodnight and said ‘see you in the morning baby’ and that was the last words he said to him.”

About epilepsy:

• Epilepsy is a condition causing seizures due to abnormal electrical activity in the brain. The seizures can range from brief “pauses” to stiffening and/or jerking of the whole body.

• Epilepsy affects close to 48,000 New Zealanders.

• Every year about 40 people in this country die from sudden unexplained death due to epilepsy.

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