And you'll soon find out that unless you meet a Cardiologist or have been diagnosed with Brugada or have a family member with it, no one will have a clue what you're talking about either. Not even your GP.
So, you too may be thinking what on earth is Brugada Syndrome! We too had the exact same question the first time we heard the it ringing in our ears and I'll never forget the Consultant who also told us not to Google it before we get the facts from the specialist consultant. I can now see why she told us that when our 7-month-old baby was the one being given the diagnosis....
When Darcie was first diagnosed we had no clue about the rhythm of a heart or any idea about sodium levels entering the heart, in fact it made me realise how little I knew about lots of things, not just how the heart worked, which of course me and my husband are now well versed in, but how things worked at a hospital...doctors, the sheer amount of people involved in surgery, charities, nurses, ICU, ambulances, critical care ambulances, emergency bedrooms, family accommodation, singing medicine, teddy bears, volunteers, reclining chairs to sleep on, so much more...and so much we learnt from those first 2 weeks that has made us eternally grateful for so many things. Life itself being the poignant one.
When we first were told Darcie may have Brugada (pronounced brew-gah-da), we were given the high-level details of the syndrome which left us puzzled. We were told mainly men in their 40's were diagnosed with it and that babies who were thought to have it were usually presented dead which was the most shocking news we've ever received as they believe it's linked to Sudden Infant Death Syndrome (SIDS). Of course, none of that sunk in at the time, and to this day it still hasn't, because when you are faced with something like this, you have to go with it. Deal with the situation that is happening to you right now and not what could have been. Back in the A&E side room where we got taken before Darcie was rushed into Resus, I'll never forget the Paramedic who was still there with us saying to me "Be strong for Darcie" after I nearly broke down when the doctor said she needed resus pads immediately put on her chest. She knew I couldn't just break down as little Darcie needed me, so she gave me some words of support that will stay with me forever. Not much to anyone else but to me, at that moment in time, I knew I couldn't waiver, so from then on, I dealt with every second as best as I could and stayed strong for our little girl. After Darcie had been admitted to ICU, I recall me and my husband saying over and over that we couldn't believe what's going on to Darcie, obviously this was shock and we barely slept or ate for 2 weeks - how we coped I have no idea. But through all of this, one thing that stayed with us, was how extremely lucky Darcie was in the fact that she had been diagnosed with Brugada Syndrome.
After her diagnosis, and of course after meeting with the specialist, we spent hours scouring the internet for information about babies with Brugada and S-ICD's but kept coming up blank. You know what it's like - and it doesn't matter what your researching - you want to find out information on something and you research it to the nth degree until you feel exhausted and ready to pop with information overload. But when searching for Brugada in babies we felt lost and didn't know where else to turn. Don't get me wrong there's a hell of a lot of information about Brugada but nothing really related to children and especially not babies. The same for ICD's - even the information booklet we got from the company that makes them has a picture of an ageing man on the front showing they are not really intended for babies but thank God they do make them for babies!! We found little useful information and it amplified what the doctors had already confirmed to us about the rarity of Darcie's diagnosis. Which is why we decided to start writing about it.
"If we can help just one other family in the same situation as ours - having a baby diagnosed with Brugada - then we will feel like sharing Darcie's story has achieved something".
We have found some international Brugada support groups on Social Media and my husband is an active member on behalf of Darcie and these have been a tremendous help for sure. Without these we wouldn't be able to read their heartfelt stories, empathise and share our own story - it really does help knowing you're not alone!
So, our aim of this - in sharing Darcie's story - is to help at least one family who has a Brugada Baby like ours. And even if you've just stumbled upon this from us sharing it with you, we hope to have you inspired after sharing Darcie's story and our journey.
Comments