It’s been another exhausting and emotional time for us lately (well all this year actually), this time with our little superstar Harper (Darcie’s identical twin). She has been so brave recently – earlier in the year, back in March, she was admitted to hospital for a pre-planned admission to have her ajamaline challenge. This is where she was put under general anaesthetic before being injected with the arrhythmia provoking drug ajamaline to see if her heart would go into an arrhythmia and if it did, it would confirm her diagnosis of Brugada Syndrome. Here's her story.
Harper seemed quite excited on arrival at the hospital for a night in her ‘blue cage’ as we called it or rather a metal cot with lots of cuddles, oodles of Peppa Pig, Hey Duggee, Zog and lots of new faces appearing at her cotside throughout the afternoon. However, I can't say I was too enthralled about being back in hospital as I feared what was to come...
After a restless and anxious night the nurse told us Harper would be going down to theatre in the afternoon so was nil-by-mouth for the entire morning which was so hard trying to tell her she couldn't eat anything, so after a fair few trips up and down the ward looking at all the stickers on the walls to keep her occupied, she eventually settled for some youtube and cuddles with me until it was her time. I spoke with the anesthetist and the doctors and they confirmed that if the ajamaline didn't provoke an arrhythmia she'd have a loop recorder implanted that would monitor her heart rhythm so until I saw the doctor again after theatre, I really had no idea what was going on with her.
Seeing another one of our babies wheeled into theatre and put to sleep is not something you ever get used to and it pained me to hear her say ‘mommy’ before she drifted off as I was hurried out of theatre trying to be strong for my little one but I was going through nothing compared to what she would be going through. After a long 2 hours, her cardiologist appeared at the hospital bedside curtain to tell me the news that they had to stop the challenge as her heart was going into an arrhythmia which confirmed she had Brugada Syndrome. The diagnosis itself wasn’t a surprise to be honest but it cemented that she would also need an ICD fitted which we were told would be in about 6 months time. So, it came as quite a shock when just a couple of months later I received a call from the hospital with a date for her surgery…
On 13th June, we had a hugely emotional farewell to the rest of our family, as only 1 parent could be with Harper at any one time on the ward, so it was decided that I would go with her the night before and give her plenty of Mommy cuddles and love before her surgery. Harper cried herself to sleep on the way to hospital and kept calling Darcie’s name which was absolutely heart wrenching. Even when we got to the ward when she was asked what her name was, she replied ‘Darcie’ and kept saying she wanted to go outside and home. 2-year-olds just don’t understand, and it made my heart ache for her to be separated from Darcie.
After a very long day already, Harper went into theatre at around 3.30pm – we didn’t even know if she’d be operated on that day as it was so late but so glad it wasn’t delayed as you emotionally gear yourself up for an actual date. Once again, I was in the familiar theatre anaesthetic room where this time she was just given gas to put her to sleep rather than be injected which took a little longer and heart breaking to watch all the same. Again, I tried to hold it together as the nurse tried to console me but all I wanted was to be holding her once again and be with Joe and the rest of the kids. When I saw Joe, he looked exactly how I did so to pass time we literally just sat in Costa Coffee while time stood still waiting for the news that Harper was in recovery. We were told that Harper should be out of theatre around 6pm so we promptly arrived back on the ward and asked if there was any news - which there wasn’t. After pacing the corridors for what seemed like forever, we saw our cardiac liaison nurse who said she’d go into theatre to see if there was any news. It was then that all the tears came flooding down as the wait was unbearable. I mean we’d done this before, but it didn’t make it any easier. She appeared a few minutes later with a smile and told us our little lady was ok and that the leads had been attached to her heart, but they still needed to insert the ICD and test it, so she’d be another hour or so. Another wait, but at least we knew she was ok, and I felt so relieved that I squeezed Joe’s hand so hard it had gone white. After around 4 hours of painful clock watching and deafening silence, we heard some commotion in the corridor and then saw her being wheeled around the corner where we were both waiting, and she actually managed a ‘Mommy’ when she saw me which was music to my ears. She looked so tiny on the bed, hooked up to machines and drips but at least she was out of theatre. Both of us spent some time with her that night but I barely slept a wink by her cot – she was in so much pain, she made noises I’d never heard come from her before and kept repeating Mommy over and over. I felt so helpless as I couldn’t even hold her as she had a chest drain in, which are absolutely necessary for cardiac patients but so very horrible for her. I hadn’t realised the length of these things until 2 days later, when I was trying to console her discomfort when the nurses took it out – it was about 10 inches long and inserted into her chest. No wonder our poor little lady was in so much pain, not only from the surgery but from that being inside her chest too. It had actually come detached from her too for a short while, as the morphine kept making her jumpy, it became dislodged, so she had to have another Xray to ensure she hadn’t got pneumothorax (air in her lungs) – thankfully she didn’t as that would have brought more unwanted complications.
For the first 2 days after surgery, you could tell Harper was in so much pain and discomfort - she was having side effects from the constant morphine pumped through her, so once the chest drain was removed, she was taken off the morphine too. She hadn’t eaten a thing for 3 days (albeit she was on a drip for 48 hours) so it was agreed to remove her off the drip and essentially make her hungry, so she’d eat and drink something. Thankfully the doctors plan worked, and she managed to eat a little something to get her strength back so much so we were given a wheelchair for her to get around the ward and after that, all she wanted to do was be wheeled around like a princess up and down the corridor a million times a day. Well, where else can you feel like a princess if not in hospital after major heart surgery!
After a long 5 days in hospital, we were gladly leaving and making our way home for a celebratory reunion, especially for Harper and Darcie – I’ve said it before, but identical twins have something so special, a bond that can never be replicated by anything or anyone else and we witnessed it once again when the girls saw each other. Darcie’s whole face lit up and she could not stop giggling and saying Harper’s name, it was so emotionally moving to watch how loving, gentle, and happy Darcie was to see her twin sister – pure bliss.
Harper’s recovery seemed different than Darcie’s, I mean she tried (and succeeded) at doing everything Darcie was doing but because she was walking, climbing and being a normal toddler (I mean, try stop a defiant 2 year old – no chance), it was very different to a 7-month-old baby who literally just wanted cuddles which I was more than happy to oblige back then. But I do think because Harper was older, her recovery was different because she wouldn’t sit still for longer than 5 minutes. There were similarities though - they both looked so pale from surgery for a good few weeks afterwards - they looked deathly white and ill for quite sometime. I think also we were bracing ourselves for the same events that followed Darcie’s surgery with Harper, when Darcie had an infection just 2 weeks after her ICD surgery, but thankfully that wasn’t the case and Harper bounced back to herself after a month or so. She was an absolute superstar and still is.
It's been 5 months since her surgery, her scars have healed amazingly and she's back to causing mischief! The only complication she's had is that her ICD has moved - it's turned about 90 degrees so is in a slightly awkward position now but it doesn't seem to be bothering her and her consultant isn't overly worried about it thankfully.
Harper truly is one amazing little girl and one half a very special, dynamic, duo.
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