The autopsy report of Case No 3251/2003 stated that ‘the body was that of a well nourished adult Caucasian female’ and that her death was consistent with Sudden Unexpected Death in Epilepsy (SUDEP).
Case No 3251/2003 was our daughter, Lieutenant Celene Harris BSc (Hons), RAN, aged 31, a beautiful, vivacious, loving and generous young woman.
In 1991, at age 19, Celene saw a neurologist after she complained about strange ‘déjà vu’ feelings which she described as ‘a tingling sensation that started from her toes, travelled slowly through her body to her head, was accompanied by vivid images of earlier experiences and left her with a headache’. These episodes occurred about every two weeks, or so. Investigations revealed nothing. The neurologist concluded that Celene was probably suffering from stress relating to her university studies.
Ten years later, when she described her first experience of waking to find she had been incontinent in bed, bitten the inside of her mouth, fallen out of bed, grazed her cheek, bruised her side and was feeling very sore all over, we were alarmed. By that time Celene had become an officer in the Royal Australian Navy, in the Hydrographic Service, a role that involved regular duty at sea.
Six months after her first significant experience, Celene had 3 tonic clonic seizures while asleep. Her boyfriend, who witnessed the seizures, took her to hospital and provided a description of the event, which helped in her diagnosis. Celene was diagnosed with epilepsy in 2001 and was prescribed medication. As a result, Celene was classified by the Navy as being ‘unfit to go to sea’, an outcome that was very distressing for her. She was posted to shore duties, while under observation by a neurologist. She was very upset at the likely prospect of not being fit again for sea duty, but eventually settled into a role in recruiting, which she enjoyed and where she made close friendships and, as an officer, earned the respect of her staff and peers.
She never did return to sea.
Celene died in her sleep, and when she was found she appeared to be sleeping peacefully on her stomach. There was no evidence of a seizure. Celene did not like the side-effects of her medication. It ‘slowed her brain’ and made her groggy, and she hated that. She did not take her pills as prescribed. Celene did not want to be an epileptic.
Celene was never told that she could die from epilepsy. She was never told that if she did not take her medication correctly, she could die. Nor were we ever told.
As a family, we had not previously heard of anyone dying from epilepsy. It may be that the medical profession takes the view that Celene and her family and friends were spared the constant prospect that any day may have been her last. Now, having lost our beautiful daughter, we feel cheated, not only at our loss, but that we would have taken her illness that much more seriously. Celene would have suffered us ‘bugging’ her; but she might be with us today, because of it. We will never know.
The message - taking anti-epileptic medication is critical - may be one of her lasting legacies to her fellow sufferers.
Global Conversation 2005