Doctors wanted to ‘prove me wrong’ over my daughter – then she died

In September 2001, my husband Roger and I were woken by strange noises.

We rushed to our eight-year-old daughter Becky’s bedroom to find she was having a seizure. When she came round, she had no idea that anything had happened.

We saw her GP urgently that morning who gave us a referral letter in a sealed envelope to take to the hospital.

I will always regret not reading that letter.

Becky was seen at the hospital by a registrar who told us not to worry as it was probably just a migraine, and told us to give her paracetamol if it happened again. They said that they wouldn’t be able to investigate further unless these episodes became ‘regular and frequent’.

Over the next two years, Becky had a handful of nighttime seizures, each spaced several months apart.

For Sarah

Last year, on March 10, we lost our beloved colleague Sarah Whiteley. Sarah was a fantastic journalist; she was Metro’s parenting columnist and a valued member of our first-person and opinion desk.

Sarah died aged 39 from SUDEP – sudden unexpected death in epilepsy. It is thought that every year around 1,000 people die from causes related to epilepsy.

With support from Sarah’s family, Metro is fundraising for two very important charities: SUDEP Action and Epilepsy Action.

From March 10 to March 26, which marks Purple Day (epilepsy awareness day), we will be running a series of features and first-person pieces, raising awareness of epilepsy and SUDEP.

Sarah was so incredible at helping other people share their experiences; she was a born storyteller and we hope to do her proud with this series, while raising money in her memory.

This was extremely worrying but as they weren’t ‘regular and frequent’, we believed there was nothing we could or should do.

When they started happening at monthly intervals in January, February and March 2004, we saw a different GP who agreed to refer Becky again.

Tragically, we subsequently found out the referral was incorrectly triaged. Instead of a neurology specialist, Becky saw a general paediatrician who diagnosed migraine and prescribed medication to treat them.

They stated that even if I was right that she had epilepsy, as by now I had come to suspect, she wouldn’t be prescribed anti-seizure medication as she was approaching puberty.

But not to worry, said the paediatrician: Becky couldn’t come to any harm from the seizures.

Becky then told him about regular lapses of attention and visual disturbances she was experiencing at school (which it was clear to us were absence seizures).

The paediatrician was still adamant it wasn’t epilepsy but agreed to arrange for an EEG to ‘prove me wrong’. Even then, he reiterated that seizure control medication would be out of the question, and that if she had already been on epilepsy medication, he would have taken her off it due to her age.

We have subsequently found this information to be totally unfounded and extremely dangerous.

The EEG did indicate a problem and Becky was referred for an MRI, the results of which were due on May 6. Two days before, on May 4, 2004, our lives changed forever.

Roger found Becky lying face down so he ruffled her hair but she didn’t stir. He pulled her duvet back and knew straight away something was seriously wrong.

He yelled for me and I rang 999 who talked us through CPR but in our heart of hearts, we knew we had lost her.

That was the worst day of our lives. Much of it is a blur but I will never forget having to say goodbye to Becky at the hospital and then being interviewed by the police back at home.

It was the police who called us a few days later to say that Becky had died from sudden unexpected death in epilepsy (SUDEP). 

At no point had any of the doctors mentioned SUDEP before. We heard it as just a phrase until my sister, who herself has controlled epilepsy, called to say she had done some research and found the charity SUDEP Action, who have been, and still are, an amazing support to us and many other bereaved families.

We felt totally let down by Becky’s GP, the registrar and the paediatrician – none of whom appeared to take us seriously or have any knowledge of epilepsy.

We requested Becky’s medical notes before her inquest and the letter the GP had written for the hospital following Becky’s first seizure stated ‘IMO (in my opinion) migraine’.

I have no doubt Becky’s misdiagnosis was based solely on those words in the GPs hand-written note.

Since Becky’s death aged just 11, I have discovered a great deal about SUDEP including the fact that around 80% of all epilepsy deaths are potentially avoidable, which for us is obviously devastating.

I feel passionately that everyone with epilepsy and parents and carers of children with epilepsy, should be given the facts about SUDEP risk very early on so they can make educated choices about their lifestyle to dramatically reduce any risk – and it can be reduced.

I believe many clinicians withhold this information for fear of ‘upsetting’ people who have been newly diagnosed with epilepsy but SUDEP risk should be openly talked about in the same way most people are aware you can die if you have asthma.

I have no doubt our lives would be vastly different if anyone had mentioned SUDEP risk while Becky was alive. I would far rather be upset than bereaved.

We will never know what Becky’s future looked like but I know she would definitely be the most caring aunty to our six-month-old granddaughter.

Our beautiful Becky was a very bright, happy girl with a wise head on her young shoulders. She was a loving sister and loyal friend who also enjoyed her own company whether it be writing poems, drawing or creating ‘crafts’ in her bedroom.

For us, everything changed that day in May 2004 and I know there will always be a Becky-shaped hole in our lives.

Do you have a story you’d like to share? Get in touch by emailing jess.austin@metro.co.uk. 

Share your views in the comments below.