In my last blog I talked about the lead up to our daughter's diagnosis with CPVT, and how the moment we had an answer it felt like a relief. It was a relief that someone understood us, someone knew what was going on and we could now work toward making things better.
But let me tell you, that relief was there but the fear, panic and devastation of what we’d just been told, completely took over and outweighed that relief. Amongst the crippling feelings there was a glimmer of hope sitting on my shoulder, holding me up.
Read my last blog if you haven’t already: How CPVT was diagnosed in our daughter
“Is She Going to Die?” – The Moment of CPVT Diagnosis
The words, “your daughter has a life threatening heart condition, CPVT,” stopped everything in that moment.
I remember my first words were, “is she going to die?” Something I never expected to say and something that was so incredibly painful to say.
Our consultant Dr Neil Seller and Specialist Cardiac Nurse, Faye, held us up in that moment and gave us the information we needed. There was no sugar coating but there was confidence and almost a drive that I could feel, that we were now in this together. Our worlds collided in the most tragic way but they had us and we had them, and we were going to work through this together.
What Happens on the Day of a CPVT Diagnosis
The day of diagnosis was quite surreal. We checked in to the ward, met Evie’s now consultant and nurse, they rigged her up with a heart monitor and then together me, Evie and her dad ran up and down the corridor of the ward, to the point where Evie was tired and emotional, wanting to stop. This was an exercise test which was monitoring how her heart reacted under physical stress and emotional stress. As soon as she got emotional, bam, the arrhythmias started to show and her consultant knew what we were facing. She had CPVT.
Starting CPVT Medication: The Uncertainty of Next Steps
The next steps were unknown. All we knew at this point was that Evie needed medication to keep her safe and to stop the arrhythmias. We didn’t know how much medication, whether it would work, or how long we’d need to stay in hospital. All we knew is that her consultant was confident we’d get to a safe level and Evie ‘would outlive him and lead a long and fulfilled life’.
We had to stay in hospital while they were getting the medication right, which meant increases and exercise tests every 4/5 days to see how her body was responding.
I remember on exercise test number three, her consultant came in and said we needed to increase her medication. In that moment I just broke down and asked, “will medication ever be enough? Is she going to be okay?”
And in that moment, he told us we were nearly there. That the medication was enough.
The wave of relief that came with that is something I can’t even fully explain. Another glimmer of hope.
The Fear of Going Home After a Heart Diagnosis
I went from not wanting to go home, to worrying that medication wouldn’t be enough, to then worrying about what life at home would even look like. How could a bag of medication keep her safe? It felt surreal. Like, how is this our reality?
Every exercise test brought a new wave of anxiety. How was Evie going to be? What would the result be? And at the same time, there was this underlying fear of what came next. Was I ready to leave the hospital and face a reality that felt so terrifying?
Hospital felt safe. Experts were around us, Evie was closely monitored and cared for. But home felt unsafe. There was no heart monitor, no regular obs, we’d be left and fully responsible to keep Evie safe and alive.
It was strange because looking at our daughter, she was well. Healthy. Her normal self. But at the same time, we felt this overwhelming need to keep her still and safe, because there was a constant fear that things weren’t okay, that her heart could be silently kicking off in the background.
Learning to Trust and Rebuild Normal Life with CPVT
We didn’t know when it was happening, or if in every moment she was okay or not.
But trying to keep a Duracell bunny 6 year old still is impossible. Every movement brought a wave of anxiety, constantly watching, constantly questioning.
And that took time. Time for that feeling to settle, time to understand what was safe, time to rebuild any sense of normal. I had to learn to trust in the experts, and trust my instincts too.
We also had reassurance from being in hospital. Even when she was bombing around, nothing was triggering and everything was okay. The only time she experienced arrhythmia was during intense exercise tests, which helped us start to understand that general day to day life was safe.
The later medication tweaks were there to suppress those above and beyond triggers, to protect her in those unexpected moments. Shocks, pain, sudden bursts of energy that come up in everyday life.
Grieving the Life You Expected: Processing a Child’s Heart Diagnosis
We needed a lot of reassurance from her medical team and asked a lot of questions. Most of our conversations, with our family and with each other, were about finding that reassurance and holding onto the small pieces of evidence that showed she was safe.
There’s so much to process. You’re grieving the life you thought you’d have, you’re questioning what the future looks like. A week ahead felt terrifying and we couldn’t see through the fog of how life would be now. You worry about every single element of what is to come and what it all means, and you don’t have all the answers, you only have some of them.
My partner kept saying, “I want to fast forward a year,” as everything felt unsafe. Is she allowed to walk? Is she allowed to run? If she did a slight skip in her step, is that allowed? What are the parameters? And how will her life be affected?
And in all honesty, the only thing that helped with that was time. Seeing her do each ‘new’ thing and be okay. Building confidence in her medical team and trusting that she was protected. Letting time pass.
The moment of diagnosis felt like finally knowing, but it also unlocked a door to the unknown and unfamiliar which felt just as scary. But it was also a path to safety and to life.
One Year On: Life After a CPVT Diagnosis
We are now a year down the line, and the fear has settled. It hasn’t gone, I don’t think it ever will, but it no longer takes over in the same way it once did.
Life looks different, but it’s still full. Evie is still Evie.
We’ve learned how to live alongside CPVT, how to understand it, how to trust the plan and slowly rebuild confidence in what everyday life looks like. There are still moments where the fear creeps in, but they pass, and they don’t hold the same weight.
If anything, this past year has shown me that diagnosis, as terrifying as it is, can also be the beginning of something that keeps your child safe. It gave us answers, it gave us a plan, and it gave us people who are walking this journey with us.
We’re still learning, still adjusting, still figuring it out. But we’re living, and that’s everything.
If you or someone you know, are going through something similar, you can access support and guidance from Poppy’s Light Foundation.
Written by: Lisa Stewart
Photo © by Karola G from Pexels.