It’s now been 11 weeks since the night I had a seizure. Completely out of the blue. After eating a roast dinner. Just sitting on the sofa. I was quickly diagnosed with Brugada Syndrome (also known as Sudden Death Syndrome) and spent 10 days in hospital wired up to a monitor 24 hours a day, before having a defibrillator (S-ICD) fitted. One night really can change everything.
Over the last few weeks it’s taken time for all this information to sink in. I’ve read websites and searched hash tags to find other people, but have found it hard to see just normal answers, either in plain English or to the little questions about how to live with this and how to deal with the overwhelming feelings. The feeling of thankfulness for still being here; that chance to have another go at life… some call it luck, fate or God, it doesn’t matter which, but just knowing it could have all be over in a heartbeat (quite literally) is tough to get your head around.
So a little bit about me… My name is Sally, I’m 30 and have three beautiful children Finn 8, Darcy 5, Edie 2 and the biggest kid of all my fiancé Ryan. I live a very normal day to day life as a full time mum and self employed hairdresser. We’re also in the middle of very slowly doing up our house. Nothing out of the ordinary there! So the reason for writing (or attempting to at least) is to help work through my own emotions and the thought that sharing a few honest feelings might hopefully help someone else going through this.
It was just this summer that I was diagnosed with Brugada Syndrome, anyone who watches Eastenders will maybe now have heard of this thanks to their current cardiac story line. Strange how the universe collides! This rare and relatively unheard of syndrome is on the flippin’ TV just a few weeks after I first hear about it. I’ve since learnt that twelve young people a week die from cardiac conditions. So, Eastenders’ story line is great for bringing some awareness to a rare heart condition in the young, even if it’s a little unrealistic! But as my other half likes to remind me, it is Eastenders after all!
I hadn’t experienced any previous symptoms of this genetic condition, so to suddenly go into cardiac arrest was a bit of a shock to say the least. Even more so for my fiancé.
Following my stay in hospital and the operation, I’m now faced with not just getting back to life physically, but with the mental challenges that this diagnosis brings. The better I feel the less I can sleep. I’m beyond tired, yet I just lie there thinking; going over and over everything that’s happened playing it over like a video. The condition is genetic, so I worry for my three children. The Guilt that I may have passed this on seems to be growing at a rapid rate. The fear of the unknown and yet some how knowing that everything can change out of the blue. We have been so lucky already – can I really be lucky enough to have 3 healthy children? I mean I always thought I was beyond lucky to have 3 healthy babies, but now to know they’re safe and that they won’t get taken from me early is a my main worry.
Mum guilt now has a whole new meaning. Not just the beige dinners, iPad entertainment and that general feeling of not doing enough for them. The guilt that I could have passed on a hereditary gene that causes sudden death, well there aren’t any words that can really truly describe that gut wrenching feeling. I’m supposed to protect them and keep them safe. To know there’s nothing, absolutely nothing, I can now do to change the outcome leaves me in turmoil.
Of course they may not have the gene, but in the mean time the ‘what if’s’ are always are at the forefront of my mind with everything I do.
Taking a bath, “what if I pass out now?”.
Crossing the road, “what if?”.
Driving, “what if?”.
Being alone, “what if?”.
Tucking them into bed at night and thinking, “what if…?”
For me, I now have procedures in place. My defibrillator is essentially like walking around with my own paramedic ready to kick start me should I need it. It’s placed under the skin on my left side with wires that run up my chest to sit over my heart ready and waiting. It’s always reading my heart trace and reporting back too should my heart go haywire again! But my babies don’t a defibrillator fitted and although this condition is usually in ages 30 + I’ve read about and heard of much younger occurrences. We are currently waiting for genetic testing for not just my children, but my parents and sister too. The doctors have tried to reassure me that the children aren’t at risk yet, should they carry the gene, but even if diagnosed in their teenage years I’ll still always see them as my babies and I don’t see this reassurance as a conciliation, just merely prolonging the results. The condition is said to be more common in males, which clearly I’m not! So I just can’t help thinking… Thinking seems to be my biggest battle.
The thought that I was so nearly robbed of life with my family, in the blink of an eye, with no chance to say goodbye. Watching them play, watching them just being, is all the more sweeter and I take a moment longer to really appreciate them in their all.
Until bam! There’s that mum guilt again, when they are doing my head in by endlessly saying they’re hungry and asking why, fighting each other, not to mention the mess… oh the mess, in every blimin’ room. Hang on – I should be more grateful right? Or is this just normal life in it’s all, surly you can’t change day to day living, but you can take a moment longer to smile and appreciate, before exploding! Maybe to think “really, is it that bad? Do I care that much?”. Surly there’s more important things, but equally it would be unrealistic to walk around 100% happy all the time (because yes, squeezing the tooth paste in the middle of the tube really does annoy me!!!).
Since this significant life changing moment I can’t help feel I want to move forward and do something positive to reflect my journey not just as me, but as a mum too. I’m yet to work it out, so for now raising awareness of this rare genetic syndrome may be enough.
The charity Cardiac Risk In the Young – CRY works to raise awareness. I have written a more detailed account of my journey in a blog -Fittingintomynewgenes.wordpress.com