Grieving Long Sutton mum's book of poems aims to raise awareness of SUDEP - a complication of epilepsy which killed her daughter
The loss of her beloved daughter through a little known complication linked to epilepsy has led to a mother publishing a book of poetry about the tragedy which aims to raise awareness of SUDEP.
Christine Carter, 55, a primary teacher from Long Sutton, was devastated when her heavily pregnant daughter Samantha Hardcastle died in her sleep at the age of 25, 13 years ago.
Samantha, who was seven months pregnant, died as a result of SUDEP - Sudden Unexpected Death in Epilepsy- a complication of the illness she had suffered since she was 16.
Neither Samantha nor her family were aware of the risk, and what makes the tragedy worse still is that a midwife had considered Samantha a 'high risk' and referred her to a neurologist after she fell and hit her face.
"Just seven days before she died Sam had seen the neurologist who dismissed the midwife's concerns and said she was not even 'low risk' let alone 'high risk' - so we had no reason to suspect anything would happen," said Christine.
She explained: "Sam was diagnosed with epilepsy at 16 and started having seizures but only at night when she was coming out of her sleep.
“We were never told about the risks – we always thought she was safe. She had a low bed with no bedside furniture so if she had a fit she wouldn't bang her head. We thought she was in the safest place, had we of known about SUDEP then we might have done something differently. It might still have happened, we will never know.
"But we didn't know about it, so we couldn't take precautions. There are a lot of people who have epilepsy that don't know about SUDEP and I want to raise awareness.
"I wrote the poems as a way of coping with losing Sam, they start with one called the 'Day Before' which talks about the day before she died when we all had lunch together - Sam, me her brother and sister. It was a most wonderful afternoon and I take comfort from that. Then they go through the various stages of grieving. I would write one poem and it would trigger a memory and I would write another.
"Writing really helped. I have three grandsons and they have helped me move on a bit. I hadn't done anything with the poems until recently but I felt ready now and so I have had them published to raise awareness of SUDEP and to help others who have lost a loved one.
"The title of the book is 'Through Plate Glass' - I chose the title because after a tragedy like this, the way you look at things changes, it is not the same, so I thought it was appropriate as it has a meaning, it suggests what it feels like."
Samantha had picked out baby names so her headstone includes her unborn son, Regan. He would be a teenager now and Christine says that while she has three grandsons, Regan is never far from her mind.
Christine said: “I still have the baby grow in my drawer. When I see it, I don’t feel sadness now, I just wonder what could have been. He would have been a teenager now."
SUDEP is where an epileptic dies in their sleep after a fit and it affects about one in every 2,000 people.
Christine's book is available via Amazon at £6, any money raised will go towards SUDEP.