Emma
Emma was born on 10 July 1996.
When she was around six or seven months old, I noticed she would drop her head, and her arms would splay out when she was sitting in her highchair. I took her to the GP but felt I was being treated like a paranoid mother, partly due to the fact I’d lost a son the year before when he was just under a month old, following heart surgery.
I remember feeling at a loss because I knew what was happening to Emma wasn’t normal.
When it happened again, I went back to the doctors’ surgery, but the GP was quite dismissive. By this time, I was feeling angry. I told my husband if it happened again, I’d take Emma straight to the hospital.
That’s what happened a few days later. The staff were great and agreed to monitor her overnight. They were able to record 30 seizures over a 24-hour period.
An MRI scan didn’t reveal anything, but Emma was put on medication for epilepsy, and she also received some occupational health as she had regressed in her development. By the age of three Emma’s seizures seemed controlled and she was progressing well. Life was chaotic over the following three years, because my husband was receiving treatment for cancer and other relatives were ill. I relied a lot on babysitters. I don’t know if I’d have picked up on Emma’s seizures had I been around more, but everything seemed to be going well.
Emma’s dad died when she was six. She started acting strangely a few months later, talking about seeing things and acting afraid. I realised that this might be due to her epilepsy, and her consultant confirmed she was now experiencing absence seizures. Into her teens, her absences became more frequent. As she got older her epilepsy was never really under control, though she was able to work full-time. However, she had different kinds of seizures, tonic-clonic, partial, petit mal and absence.
Her tonic-clonic seizures were usually triggered by her periods. Emma didn’t have regular periods so never knew when they would start. She wouldn’t recall all her seizures but would find herself on the floor and her head usually hurt afterwards. On one occasion, her boyfriend took a video of her having a seizure at the request of the consultant in Adult Services, because the consultant had begun questioning whether Emma had epilepsy at all, suggesting she might be having non-epileptic seizures. After 20 years of being told she had – and treated for – epilepsy, Emma felt understandably angry. I do not know why a consultant would say such a thing.
Emma continued to struggle. By 2019 /20 she was living on her own and her seizures were happening more often. In September 2019, she contacted me, she was slurring her words and became incoherent. She was taken to hospital and shortly after she arrived she went into Status Epilepticus which resulted in her being put under a general anesthetic to stop the continuous seizure. We thought we were going to lose her then. Later, Covid made it difficult for us to see her, but we kept in daily contact.
Around this time, doctors reviewed her MRI scans from when she was a baby and discovered the cause of her epilepsy, though I only found out about this a few months before she died. They found she had Schizencephaly left posterior hemisphere malformation. This diagnosis wouldn’t have been possible when Emma was a child.
Emma was now having to wait 15 months between consultations though she could phone an epilepsy nurse if things were bad. We were both phoning the nurse a lot. Emma would also stay with me if she felt out of sorts, and her sister kept in regular contact with her too.
On 28th April 2023, Emma died of SUDEP. Her sister and I had spoken to her the previous evening, and she was full of plans for the next day. I will never forget that day for as long as I live. When I couldn’t get in touch with her and saw she hadn’t been online since the previous evening, I knew in my heart that she had died. To watch police breaking into her flat was traumatising. I had to break the news to her sister and brother before letting the extended family know. That day will always haunt me.
I knew about the risks of SUDEP and so did Emma, because we’d known someone who had died of it.
Today, I’m left with unanswered questions. It was ridiculous that she’d have to go 15 months between appointments when she was having so many uncontrolled seizures. Also, her periods were a known trigger for her seizures so why was there no tie up with gynecology?
Since her death I’ve also discovered more about other medications such as sodium valproate. From what I’ve learnt, I would have thought valproate would have been perfect for Emma. But no one ever mentioned it to us. Not once. Emma should have been given the choice. Having a baby wasn’t foremost in her mind – it annoyed her when she was questioned about having a family. She just wasn’t in that place.
We could see Emma’s seizures were getting progressively worse and we knew the risks of SUDEP. We were conscious these risks were getting higher, yet we didn’t even know about valproate. Why was Emma not offered it?
The whole process, from the time Emma was a baby right up to her death was a fight.
My relationship with Emma as a teenager was quite fraught and we didn’t always see eye to eye, but I was always there to support her, and we had our good times. As she matured, we built bridges and started to do things together, such as going for meals or to the cinema.
Since Emma’s death I have been approached by a few people who have told me how Emma supported them when they were struggling and how much that meant to them. That makes me feel so proud that although she had her own troubles she took time to talk to others who were having issues of their own.
Now that is all gone.
Dianne
Emma’s mother
