This post is long overdue and has been in the making since last September! Anyone who knows me knows my time is pretty much constantly occupied by my wonderful 4 children, my lovely husband, keeping my house looking good (thanks to Mrs Hinch’s tips), plenty of hospital follow ups, oodles of picnics & fun at National Trust places, oh and a full-time job! So, by no means any less pivotal and not ‘new’ news to us, it’s so important that we share all our children’s stories so far...
Our wonderful son Bailey will turn 12 next month and has Type 1 Brugada Syndrome which means his resting ECG displays the Brugada pattern, diagnosing him with the condition without the need for any further tests like the ajamaline challenge that Harper had to confirm her diagnosis. This, along with other factors (gender, Darcie’s cardiac arrest and genetic testing) puts him at higher risk of having a cardiac event.
We found out Bailey’s diagnosis about 6 months after Darcie's cardiac arrest when I had a call from the hospital asking me to bring both Caitlin and Bailey in that same day to have repeat ECG's. At the time, Bailey was 9 and Caitlin 11. They both already had ECG's and echo's when Darcie was admitted to hospital in Dec-2019 and at that time we were told that their ECG's were mostly normal so to be honest, with everything going on at the time (and our lack of knowledge about Brugada), I didn’t really give it another thought. Even when driving to the hospital that same day - it didn’t even occur to me that a same day appointment seemed a bit unusual, so off we went for a yet another trip to the hospital.
After seeing some familiar faces, both Caitlin and Bailey had their ECG’s and off the three of us went into a side room where our cardiologist was waiting with another doctor and our lovely ECG physician and proceeded to tell me that Caitlin’s ECG was normal at that time which I expected (but more to come on Caitlin at a later date), I mean why or how could another one of our children have the same condition as Darcie? I then anticipated hearing the same words repeated about Bailey, but the doctor proceeded to tell me clear as anything that Bailey’s ECG was far from normal and he had the Type 1 Brugada pattern, clinically diagnosing him with Type 1 Brugada Syndrome there and then. Was I really hearing these words for the second time? I was in complete shock. I immediately broke down sobbing and felt a flood of emotions come back to me, vividly having flashbacks of Darcie back on 27th December 2019. The kids were sitting there right next to me in a completely surreal experience. I quietly said through tears that I couldn’t go through what happened with Darcie again to another one of our children and I remember seeing our ECG physician nodding furiously in acknowledgement and understanding at my every word. I couldn’t actually believe what I was hearing - that not only Darcie, but now Bailey was at high risk of having a cardiac arrest. At any time. I mean how do you as a parent actually process that kind of information? I honestly don’t think I’d actually come to terms with what happened to Darcie, let alone being told that Bailey has the same condition, and you know, to this day, I still don’t think I’ve properly processed any of this. And don’t think I ever will fully. I remember being told that day too, that when Brugada is diagnosed in one family member, it is often diagnosed in siblings too due to the genetics behind it all. I didn’t fully understand the weight of this information until that day - about genetics playing such a role in diagnosing Brugada Syndrome. It now hit me so hard in the face that I understood.
Bailey, thank goodness, is as blasé as kids get. When I was being told this, he was on his phone looking towards the window and one of the staff members tried to distract him too with something out the window, so he had no inkling what was being said. Either that, or he’s very ingenious and played the silent game and took it all in but acted to me like he heard nothing (which is what he normally does). Nothing got passed Caitlin though. Being that bit older, she understood exactly what was being said. I’m not sure what was going through her mind in that room when she was too trying to absorb this, but her face looked blank. She’d already had an extremely tough time when Darcie had been in hospital and for months afterwards too. She’d took it upon herself to worry not only for Darcie and if she would end up in hospital again, but for us all too, which at the time for an 11-year-old was too much to handle. Joe had no idea that I’d even gone to the hospital that day and tried calling me several times whilst I was with the cardiology team trying to absorb this information. When I eventually phoned back in a blur walking down the familiar hospital corridors and told him a) where I was with the older kids and b) that Bailey was just diagnosed with Brugada too, it hit him like a tonne of bricks too – totally and completely unexpected. He was only calling to see where we were as he’d locked himself out the house which instantly became insignificant.
Having moments like this amplifies what’s important and what’s not. And in all truth, there’s not many things that are irrefutably important in life – but for me, having our children loved & happy and making memories with them as a family is top of my list. And that’s amplified a billion times over given the events that have followed since what we have coined ‘Darcie Day’ back in 2019.
Since Bailey’s diagnosis in Summer 2020, we were left with some heavy decisions to make, and it was agreed that we would discuss Bailey’s management in conjunction with our cardiology team. Being in lockdown meant that those conversations had to be few and far in between and Bailey’s treatment was delayed a little. His cardiologist had stated early on that Bailey would require an ICD, like Darcie (and since Harper), but did want to wait until he’s in his mid-teens to have an ICD placed under his collar bone where adults have them placed, opposed to in his abdomen like Darcie due to the higher risk of complications. We had to get our heads around him having an ICD and also the prospect of delaying it a few years too. What if he had a cardiac arrest before then? How would I cope with knowing I agreed to wait? This is still very real for us now and thoughts I try not to bring to the forefront of my mind but unfortunately, they are always there lingering. We’d had several email conversations with the hospital and finally we met in person when lockdown eased slightly, to discuss not only Bailey but all the children’s management. We came to a joint decision that Bailey would start taking life-long medication and be implanted with a ‘loop recorder’ for the next few years.
Fast forward to September 2021 and we finally had the date for Bailey to go into hospital. On the morning of Bailey’s admission, he wasn’t too impressed at the 6am start to the day to get to hospital but him and Joe got there and had a very long day to say the least. Anyone who’s had the privilege of staying in hospital knows that there is a hell of a lot of hanging around and not doing much, especially prior to any surgery. So, Bailey thinking he was going to have a whale of a time missing school for a few days, I think actually wanted to be back at school when he figured out fast that hospitals were far from exciting. On his first day, the doctors started him on a low dose of ‘Quinidine’. Interestingly, this drug used to treat malaria and is from the bark of a tree, although no longer used for malaria, it’s an anti-arrhythmia drug used to treat certain types of irregular arrhythmia's, typically Brugada, and works by making your heart more resistant to abnormal activity. It’s known to have some horrendous side effects, so the doctors wanted to ensure the dosage was right from the onset and any side effects were promptly picked up.
When I arrived at hospital the next day, I found Bailey with a headset on playing on an Xbox – he was so occupied by the Xbox that he wasn’t even bothered I was there – boys hey! But at least he wasn't bored and could be entertained for the day as he wasn’t going to theatre until the next day. We even had some quality time together and even got moved a room all by ourselves for most of the day but then around teatime got some company. After another long mostly uneventful day, we tried to get some shut eye but the boy’s dad opposite had other ideas for us. He snored so loud neither of us could get any sleep! I mean, sleepless nights are a given in hospital and this wasn’t anything new but that snoring - OMG! Although we laughed and joked about it, after about 2 hours we decided to let the sound of Nature ease us to sleep, so on went Spotify to play some soothing rainforest sounds to gently send us to sleep.
The next morning, it was confirmed Bailey was going into theatre first, which is by far the best scenario as he literally woke up, put his gown on and was wheeled into theatre. Again, I was in that all familiar anaesthetic room with the lovely team who had already decided Bailey would have gas only and the anaesthetic nurse soothed Bailey to sleep by talking about scuba diving and the beaches of Australia which helped him relax, but he did the same thing as Harper and called out my name as he drifted off. This was the fourth time I’d been in that room with 3 different children, and it really, really wasn’t any easier. I walked out the room crying - Bailey's 11 but he still needs his mom as much as the girls, especially when he understands exactly what's going on!
After an hour or so of walking outside and speaking with Joe, I waited back at his empty bedside where he was wheeled in and to see him was absolute joy – he was freezing cold though and kept saying over and over how funny it was that he’d gone to sleep and a couple of hours later woke up feeling like it was minutes. He promptly went back to sleep and got a lot of rest that day. He had a few ECG’s and we had yet another present to take home with us, in the form of another home monitoring device which relays his all-important heart information back to the hospital. We didn’t know if he’d be discharged that day or not so Joe and I swapped again so I could see the other kids and I had a call later afternoon from Joe and Bailey making out like they were still in hospital and wouldn’t be coming home, but the joke was on me as they were about 10 minutes away! I was super excited to know they were on their way home and all the family would be together again! Bailey was treated like a Prince of course and milked it as much as he could – and who can blame him!
Bailey has a Medtronic Reveal LINQ device implanted on the left side of his chest just under the skin over his heart and is about the size of a USB device. His wound is only about 1cm wide so has left little scarring. Because of his age and his slim frame, you can see and feel it, but he doesn’t seem to be bothered by it. We purchased a protector vest for him that we had imported from America so when he plays sport, he feels more assured that his device won’t be accidentally knocked. His device works by collecting heart rhythm data and sends it wirelessly to an external device placed in his bedroom (about the size of a router) that is then sent to the hospital. The device can be implanted for up to three years and will collect continuous heart data that is reviewed by his cardiologist. The plan is to leave it in for the three years when he’ll turn 14 and then have an ICD. The difference between this device and an ICD is that this device monitors the heart only and it does not provide any protection of a shock, so the AED will continue to be an essential item to take with us on day’s out for Bailey as well as me and Caitlin. What we found to be helpful is to have a medical care plan with Bailey’s school – it’s tailored specifically for Bailey and provides essential information about the condition, symptoms to watch out for and what to do in an emergency for all staff members. The school also has an AED which offers some peace of mind for us too. He also wears a ‘Neebo’ at night which sends real time data heart rate data (amongst other data) directly to our phones so we get an alarm if something isn’t right. Anything we can do to feel reassured is a blessing for us!
Bailey has been both blasé and brave throughout the past 2 years since his diagnosis and he really is one in a million!
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