I kissed her cold face

W hen I woke on the morning of 2 July 1999, it was such a
beautiful day. I had no way of knowing that before the sun went
down my life would change forever.

My daughter Kristen had been diagnosed with epilepsy 10 years
previously when she was nearly 15 years old. Her epilepsy had been
controlled with medication and on average she had one or two
seizures a year.

But this changed when she became pregnant and her seizures
became more frequent. She was told that this often happened during
pregnancy. Not only did Kristen’s seizures become more
frequent but they also happened during her sleep rather than during
the day, which had been the norm. This gave me a sense of security
because at least she couldn’t injure herself or the baby
while having a seizure in bed. I couldn’t have been more
wrong.

On the morning of 2 July Kristen saw her partner Neil off to
work. She had worked until 10pm the night before and told Neil she
was going back to bed. He was the last person to see her alive
– when Neil returned from work in the evening he found her
dead in bed. The news of her death was devastating; it was made
worse by the fact that we were told there were no obvious signs of
cause of death. In a situation like this the death is treated with
suspicion.

The next time I saw my daughter was on a mortuary slab; they had
bound her hair in a white sheet and a purple velvet cloth with gold
fringes covered her body. The first thing I saw was her heavily
pregnant belly; Kristen was eight months pregnant. We could not
touch her because of the circumstances of her sudden death. All we
could see of her was her tiny face, which I kissed when I left.

I had to withdraw quickly from the room because she was as cold
as marble and I hadn’t expected it. The memory of that day
will stay with me forever and I sincerely hope no other mother has
to witness such a sight.

It was six weeks later that we learned that Kristen had died
from epilepsy. It made no sense to me at all as she had had
epilepsy for a decade; how could she possibly just die from it? I
did not know that having epilepsy could be fatal and nobody warned
me of the risks of sudden unexpected death in epilepsy.

Since Kristen’s death I have learned about epilepsy. It is
a complex condition and most people are ignorant about the facts,
including medical professionals. I now work for the Gwent Epilepsy
Group, a voluntary organisation set up in 1992 because of the lack
of support and advice for people with epilepsy.

The work I do will never bring back my daughter and grandson.
Until people with epilepsy are treated equally and receive the same
services as people with other chronic conditions, voluntary
services like ours are vital.