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Alexandra and Beatrice

We regularly visit the two places where Bea’s ashes are, one nearby to home and the other at the beach in Devon. She loved the beach and we had had so many family holidays and fun there.

Alexandra is the mother of Beatrice, who very sadly passed away due to Sudden Unexpected Death in Epilepsy (SUDEP) in July 2019. In this article, she talks about Beatrice’s life after being diagnosed with epilepsy and why she believes families should be made aware of the reality of SUDEP.   

Bea had her first seizure in September 2017, aged 16, in the early hours of the morning. After an MRI scan and an EEG, the event was diagnosed as a one-off nocturnal seizure and no medication was given. In March 2019, Bea was about to start driving lessons, aged 18, but suffered a series of three seizures over two weekends, all nocturnal. We were in and out of hospital before an appointment was made to see a new consultant, at which time epilepsy was diagnosed.I was not surprised by the news as I had suffered occasional photosensitive seizures in my teens. Bea had also had strange dreams which, when she tried to explain them, sounded like panic attacks. Bea’s consultant told me that what I had suffered as a teenager would not have made any difference to Bea's health, but suddenly I was interrogating everything.The news did not scare me or my husband, but even the slightest noise from her room at night made one of us get up to check on her, and we were even more on top of keeping her healthy than we already were. Because of the timing and the few seizures Bea had, the interruption of epilepsy was manageable.Bea became pregnant in the spring of 2018 and gave birth to Gracie at Andover Hospital on 30th December 2018: everything went well. It was an incredible experience to be with her throughout her whole pregnancy and the birth of her daughter, my granddaughter. After the seizures in March 2019, we had Gracie in with us as much as possible so Bea could get plenty of sleep. We tried to explain to Bea that she needed to rest and eat well, but that’s difficult to hear for an 18-year-old with her whole life in front of her.

As well as being a Mummy, Bea was also studying for her A levels at college and set to start a BTEC in September. Bea was stressed by some of her friendships and relationships. Unfortunately, the pressure from this was often too much for her to handle.We were constantly reminding her to take her epilepsy medication. Later in the Coroner’s report, we found Bea did not have the medication in her system, so now I wonder what else we could have done.Bea's last seizure happened on the morning of 10th July 2019. I will never forget the details of that day; the shock, the disbelief, the feeling that you can’t stand up any longer. I had to make a hard decision that morning in the hospital - one I hope to never make again - and seeing my beautiful, happy, bright baby girl there and knowing I couldn’t help her, well, there are no words.

The rest turns into a blur, and yet it is so clear.All the professional people helping us at that time could not have been better - each and everyone gave us time and were compassionate.There had to be an inquest into Bea’s death so we could not register it officially for some time, which added to the pain. At the same time, we were in court gaining parental responsibility for Gracie.We regularly visit the two places where Bea’s ashes are, one nearby to home and the other at the beach in Devon. She loved the beach and we had had so many family holidays and fun there. We talk about Bea all the time, show Gracie photos of her Mummy, tell her every day how much she loves her, and how lucky we are to have such a special job of looking after her. At some point, I know I will need to explain in more detail to Gracie why her Mummy is not with us.

I do think something like this can either break a family or bring them together. It has broken each of us individually but somehow united us as a larger family. It’s OK to cry, it’s OK to talk about what has happened, it’s OK to laugh about all the funny things Bea got up to. When I’m on my own it can be horrific, but with family, it’s OK.

You also learn who your support network is. Close friends disappeared from our lives; maybe they didn’t know what to say or how to be around us. Other people stepped up to be here for us, for which I will never forget. You need people who will stand next to you when the worst thing in the world is happening, check in on you, bring cake, keep you going.When I found some strength, I knew it was time to put it into raising awareness for epilepsy. Bea has a JustGiving page and a memorial fund with Epilepsy Research UK. Together, with family and friends, we have so far raised over £5,000 and we continue to raise money and awareness.Now, 15 months later, I get through each day - sometimes with only a little cry, sometimes I feel like I have been hit by a truck, and it can come out of nowhere. People say that it will be a ‘new normal' - I haven’t yet found this and am not sure if I ever will. Being able to bring up Gracie as per Bea’s wishes in her will has given me the strength to continue, and it is both a blessing and an honour to play such a huge part of this little girl’s life.

To someone newly diagnosed, I would suggest they and their family ask as many questions as possible to their consultant, doctor, and anyone else giving them care. Speak to other people with the same condition - this will make you realise you are not alone and that there are support networks out there. Talk to your family and close friends because they can help you in lots of different ways. I guarantee most people will not be aware that this condition can be life-threatening, but talking to them will help them to understand.Also, do not let epilepsy define you, or put you off from doing anything and living your life - yes, you must look after yourself, take your medication, beware of your triggers, but live life to the full!I do not think people with epilepsy and their families should fear the condition, but consultants should warn about SUDEP (Sudden Unexpected Death in Epilepsy) - this was never discussed with us.

From what I have read since this seems to be a failure for many families going through what we are. People should be given advice on bed alarms - what to buy, where from, and offered funding to help. A bed alarm was only mentioned to Bea by her GP shortly before her last seizure, we did not manage to purchase one in time, nor did we have the information to do so.More research should be carried out in young women with epilepsy who have recently given birth, as well as people taking anti-depressants.

How much of this contributed to losing my daughter? I do wonder if her death was a disaster that could have been prevented.- Alexandra, November 2020