Two years ago, on this day, you and I shared something that forever changed us. It was the day that both our hearts were broken. Yours by a disease I had never heard of, and mine by the knowledge that your life would never be the same.
It was Friday 12th June, you were 9 weeks old that day and you had been sick for 13 days. Despite a cocktail of antipyretics and antibiotics, the fever continued to rage through your tiny body, and each temperature spike would see your heart rate soar to frightening heights. The settings on the heart monitor had to be set far outside of normal levels or we would never have had any rest from it’s alarm, and the nurses maintained a close eye on you during those first two weeks. By that time, you had undergone countless blood tests, two lumbar punctures, ultrasounds, x-rays, an MRI and a bone marrow aspiration. Just a couple of days before this day your haemoglobin levels dropped dangerously low and you had to receive a blood transfusion. That’s when I promised I would start giving blood as soon as we got out of there; a promise I have kept ever since. I remember watching the blood travelling through those tubes incredulous that this was happening to us, to you. I think I must have spent those first two weeks in a state of shock, it seemed so surreal. How could you be so sick?
It was after they gave you the blood transfusion that they came to talk to me about a bone marrow aspiration. They didn’t need to tell me what they were looking for – there’s only one reason they wanted to get at your cells. After the longest 3 hours of my life, where I was convinced that you were not going to wake up, they called to tell us we could come and collect you from theatre recovery. Watching you go to sleep from the general anaesthetic was one of the hardest things I had ever had to do, and I hoped with all my heart that I would never have to see that again. I cannot even begin to explain the relief when I saw you awake again.
The bone marrow test showed that your cells were healthy, and we celebrated that fact. And yet that meant that you were really sick, and still nobody knew why.
That afternoon, on the 12th day, a Rheumatologist was asked to come and take a look at a rash that had appeared on your limbs. He said that it was highly likely that you had an infection, and that there was a strong chance that you would get better and we would leave the hospital without any diagnosis; one of those unexplained things that we would eventually forget. But. But, he said, we ought to send you for another echocardiogram on your heart just to be sure. Be sure of what? I didn’t ask. Why didn’t I ask? I’ll always wonder about that. In case you picked up on the word ‘another’, yes you are right. You had already had a check on your heart earlier that week, on day 9, and it showed you had a murmur but nothing to be concerned about. That echo was to throw them off the scent that the Rheumatologist had picked back up.
And so the day came. The 12th June. Day 13. Unlucky for some.
I took you with a nurse for your echocardiogram. You’d had one before and there was nothing to worry about, so I just assumed this one would be the same. Except it wasn’t. And nothing has been the same since.
That echocardiogram showed dilation of your coronary arteries, over five times their normal size. Coronary aneurysms don’t happen to children. Not unless they have Kawasaki Disease. And there it was, on the 13th day of your illness, we finally had a diagnosis. What a relief! That meant they could treat you, and you would get better, and we would go home and forget all about the worst two weeks of our lives. Except then I had no idea that the damage wasn’t temporary. Yes, they could treat the disease, but they could not reverse the damage that it had done to your heart. We had to face the fact that one of, if not the most important organ in your body, was broken.
You were given a dose of intravenous immunoglobulin (IVIG), which is a blood product made from the antibodies from thousands of human blood donations, high dose aspirin, and methylprednisolone (intravenous steroids). All the antibiotics were stopped – Kawasaki Disease is not an infection, but a vasculitis which causes inflammation through all the arteries in the body, with a penchant for little hearts. The Children’s Hospital has every paediatric medical discipline under it’s roof, with the exception of Cardiology, and so they contacted a ‘nearby’ hospital with a paediatric Cardiology unit to ask for advice. We were told that they had shared your results and that the Cardiac Unit was “not excited.” Apparently that was good news. It meant that, whilst your heart was affected by the disease, it was not considered worrying enough to require more specialist care, and the children’s hospital continued to monitor your situation. You had been so sick, and you were so young, that they didn’t take any chances, and you were sent for follow up echoes on Saturday and Sunday morning; no change. No change is good. And on Monday morning, you were sent for another. Except this time, the nearby Cardiologists had reason to become “excited” and preparations were made for your ambulance transfer to the Cardiac High Dependency Unit, 36 miles away – but not before you had received a 2nd dose of IVIG to attempt what the first dose had failed to do. Within 3 days of your diagnosis, your coronary arteries had dilated further and we would hear the word ‘aneurysms’ for the first time.
I’ve written many times about what happened next, and I hate to bring it all up again sweetheart. It’s just that, despite my very best attempts to live ‘in the moment’, I must have left the door to this memory slightly ajar. I didn’t mean to let it in, but it seeped through the cracks and it’s been like watching a scary movie through parted fingers all day. No matter how hard I’ve tried, I just can’t help but relive those moments. Today I feel all that pain, all over again. I drove to Sheffield this evening on an errand, and felt the tears rolling down my cheeks. I have never seen as many flashing blue lights on the motorway as I did tonight, jeering at me, forcing me to remember, and fleetingly I wondered how easy it might be to make that pain go away. But then I remembered that you are still here, and it isn’t 2015 anymore.
And I guess as I sit here tapping away at the keyboard, I have to ask myself whether the number 13 really was unlucky for you. Because despite the fact that your heart will never be the same again, I have to remind myself that the improvement we have seen has indeed proved them wrong. In fact, I would go as far as saying that for you, 13 was very lucky indeed. The decision that your doctors made on that day was one of the decisions that saved your life, I am certain of it. I cannot even begin to imagine how differently things would have turned out had they not carried out that echo. And I can be angry and sad for the rest of our days that they didn’t catch it earlier, but that won’t make the pain go away.
Today I will allow myself to feel the grief of loss for your perfect heart again, but tomorrow I shall remind myself of how full my heart is for loving you. I cannot remain sad, when I am so incredibly lucky to have you here.
I love you Peanut.