It seems like such a long time ago that I ever really felt afraid for you, but today I find myself reunited with feelings I hoped would never feature in my life again. Looking at you, no-one would understand what there could be to worry about – you are a ‘picture of health’ as they say. Those rosy cheeks and that sparkle in your blue, blue eyes betray what lies beneath.
For the last year, we have taken the news from every cardiology follow-up as fantastic steps towards you being a miracle in the making. Each appointment showed further reduction in the aneurysms in your heart, and we celebrated every little move towards what we thought was your recovery from this awful disease. And then, little by little, the reality dawned that the likelihood that your heart was magically repairing itself from the damage that had been done was slim, if near impossible. My mind is filled with a constant echo of statements and warnings; babies diagnosed under 6-months are at increased risk of coronary stenosis, 75% of children with giant aneurysms will require intervention later in life, an angiogram will show us if there is any sign of stenosis, look out for signs of angina… the list goes on.
Something shifted this weekend following the receipt of the letter from your last Cardiology appointment. At that appointment the Cardiologist measured your coronaries with an echocardiogram. I noticed the figures 0.18 at the bottom of the screen – that is 1.8mm. The cardiologist said “About the same [as last time]” and I remember thinking, “No, that’s smaller still…” That said, the outcome was still the same, and your Cardiologist continued to urge us to proceed with the advised angiogram. In the time since that appointment I had some e-mail exchange with a reputable Cardiologist in the Kawasaki world which gave me some comfort, and I have also spoken with the Cardiac Nurses who have agreed to make an appointment for me to meet with the consultant who will perform the angiogram to ensure I am completely comfortable with what you will go through when the time comes. And then at the end of last week the letter came. Encouragingly, your Doctor has discussed your case with a Paediatric Cardiologist in London, whose name I immediately recognised as one of the speakers at the KD Symposium in London earlier this year. I was pleased that your doctor had taken this step, and it restored my faith a little. Well a lot, really. The letter also gave a better explanation than I received verbally at your appointment, and I now understand that an angiogram is really the only solution because of your size. Although I still feel some degree of trepidation about the procedure, I have reconciled myself to the idea that this really is necessary for us to understand how this disease will continue to affect you in your future.
It was niggling me that the measurement was described as ‘the same’ at your appointment, but my memory was telling me something different. So I fished out your medical file (yes, I have a very organised file that is getting pretty thick now!) to have a look through the previous letters. I was right – the previous appointment recorded a measurement for your left coronary artery (LCA) as 2.7mm. So rather than being ‘the same’, the artery has actually remodelled by almost another millimetre, which is a reduction of a third of the size that it was just three months prior! I don’t know if you can work out where my thoughts are going with this, but let me tell you, it has got me really concerned.
My initial concern is obviously the speed of remodelling. OK, so we don’t know what is causing that – could it be layers of blood clot (thrombus) that is causing a narrowing of the arteries, or scar tissue forming on the artery wall as the aneurysms repair? Since your KD journey began, I have plotted the measurements on a graph since the beginning (this will come as no surprise to those that know me personally!). It’s been a bit hit and miss, because not all the measurements are documented in the letters (sometimes we get all three – left, right, and left anterior descending) sometimes only some, sometimes none. And I haven’t always managed to jot the numbers down from the bottom of the screen during the appointments. But one measurement that I have been able to capture consistently is that of your LCA, which was the most severely affected by Kawasaki Disease.
What the graph shows me is that your LCA is now 65% more narrow than it was at it’s worst, and the pattern of remodelling has been as follows:-June (diagnosis) to July 2015 15% reduction
July to August 2015 32% reduction
August to September 2015 10% increase (anomaly?)
September to November 2015 6% reduction
November ’15 to May 2016 13% reduction
May to September 2016 33% reduction
Now I’m not statistician, but these numbers have got me worrying about the rate of remodelling. How long it could be before that 1.8mm results in 100% stenosis? And if your arteries become completely occluded, preventing the blood from flowing through your heart, there is no other outcome but a heart attack. Is that even possible?! I can’t even…
So now I’m thinking all sorts – why didn’t the Cardiologist mention this difference at the last appointment? Is she not as worried as me? She said the measurements were the same, but they clearly are not. And if you are now on a waiting list for months before the investigation can be carried out, I am worried that you could suffer a heart attack before we get the chance to understand what is going on. I mean, can that happen? What is the likelihood? It’s possible, but is it probable?
I’ve left a message with the Cardiac Nurses – I really need to speak to them to air my concerns and get some answers. I feel, whether logical or not, that we are just waiting for your heart to fail. And what just dawned on me last night as I was over-thinking this whole situation is that we have never considered when the worst could happen. We were told to look out for signs of angina – the only sign we were made aware of was if you were to suddenly stop playing for example. But last night as I marvelled at this amazing little girl who sleeps through the night, always has, the thought entered my head; what if it happens when you are asleep…? I mean, if I were a statistician I would be able to calculate the probability of a heart attack happening at a certain point. You sleep between 14 and 17 hours per day! That means that you are asleep for up to 70% of any given day…
So now I have a new fear, and I cannot shake it. It kept me awake last night and brought tears silently streaming as I lay there struggling to get to sleep. It caused me to jump out of bed on more than one occasion to check the monitor was switched on, and it meant that I woke this morning with that old feeling of dread until I heard the first murmur from your room. When you were diagnosed with KD and we were told that your heart was significantly damaged by the disease, I feared every day that I would wake to find you taken from us. I was so afraid of finding you gone that I was frozen to the bed until I heard even just the slightest movement from the baby monitor. Every bit of me wanted to get out of bed and check you were breathing, but I just couldn’t physically move because the fear kept me pinned down. How would I know? I mean are there any signs? You often cry out in your sleep, maybe just once, and then you drift back off to sleep. Is that what it would be like? If you were sleeping, and me and Daddy were fast asleep, would there be anything to hear?
I have read that the signs of heart failure in a child could include the following:-
- excessive sweating
- extreme tiredness and fatigue
- poor feeding
- rapid heartbeat
- rapid breathing
- shortness of breath
- chest pain
- a blue tinge to the skin
Would you let us know about any of those if you were sleeping? Would we hear? Would we know you were in trouble? You think about emergency procedures in the event of a heart attack – call 999, get an ambulance, perform CPR… But if it happened in your sleep and we didn’t know, you could be left for hours before we realised, and by then it would be too late.
I wish I didn’t have such a vivid imagination. My mind plays out these scenes like a movie in my head, and I can’t shake it. I have ‘seen’ it – the moment I find you gone. I have ‘felt’ how I didn’t want to live anymore in a world without you in it. I am angry at the world, angry at this insidious disease that crept up on you and broke your heart. And I am afraid beyond words of what might be around the corner. All parents worry about the fate of their children. Hopefully most see the death of their child as an unlikely threat, and it features just for a nanosecond of each day. To know that there is a possibility (regardless of the probability) of losing your child is a feeling I cannot describe adequately to anyone who hasn’t experienced something similar. It’s like standing on the edge of a cliff, a dark and indeterminate cavern beneath, knowing that just one breath of wind could change the course of your life forever. Sometimes I can barely breathe for fear that the slightest movement could unbalance me.
You have many people rooting for you – hoping, wishing, praying. Some believe you are going to change the KD history books. Others say you are a fighter, an inspiration and a miracle. I’m too superstitious to believe in any of that for fear of jinxing your progress. There are some that have so much faith in God that they ‘know’ you will be ok. I worry that if there is a God his plan could be for the world to learn from a tragedy – your tragedy. I just don’t know anymore, Peanut. All I know is that right now I find myself out of control yet again at the hands of this disease. I am still in utter disbelief when I consider the events of the last year, and often think about bundling you in the car and running far, far away from all this. Pretend it never happened. But there isn’t just you to think about, and I have responsibilities and relationships to consider. And sometimes, no matter how hard it is, I just have to accept that I am indeed a grown up.
I don’t want to be a grown up anymore :(