A Life Unmonitored

Dear Freya

On the 31st May 2015, you became sick and our lives were turned upside down. By the time you read this, you will have heard the story a million and one times, but I’m going to tell you again.

You were 7 weeks old, and perfect. Those first weeks of your time with us were wonderful, and we had no idea what was around the corner for you. How could we know? You showed no signs of ill health or discontentment. Like I said, you were perfect; at least to us anyway. But then you woke on that Sunday morning in May, snuffly, lethargic and unable to feed and when we called the out of hours doctor to tell them you had a fever, they told us to take you straight to A&E. It was lucky that we did, because a few hours after your admittance your little body started to go into shock. I watched the doctors do everything they could to resuscitate you, and feared we might lose you. I will never forget standing there, my hands gripping the bars of your hospital cot, staring in disbelief and willing them to make you better. They did, and you were stable, and I breathed a sigh of relief. You were not out of the woods yet though, and you remained in a high dependency unit for several days before you were stable enough to return to a private room on the ward.

In those early days, it was difficult to say what was causing you to be so poorly. The doctors took samples of blood, urine, nasal fluid and saliva to try to discover the cause of your illness, but none of the tests provided an answer. So they continued to treat you with antipyretics for the fever, and a cocktail of antibiotics, in the hope that one of the drugs would combat whatever it was. But you didn’t get better. You were rigged up to monitors, and drips, with cannula in your wrists, ankles and even your head. You were fed via a tube in your nose. Your heart rate would soar every time your fever spiked, and your oxygen levels were dangerously low. Still, nobody knew what was wrong. You had x-rays on your head, your chest, your stomach. Nothing. You had a lumbar puncture. Nothing. And the doctors were struggling to hide their concern.

I longed to hold you, but you were so fragile, so unstable, that I daren’t move you from your safe place in that cot. So I sat by your side, and prayed for you to get well.

After a week, you were still no better, and the doctors decided to transfer you to the specialist Children’s Hospital in Sheffield. The tests continued, and you underwent further lumbar punctures and a bone marrow aspiration under general anaesthetic. You were so sick, that you slept through 20 minutes in an MRI scanner. You won’t remember the noise that scanner made, but I do. I think I always will.

It took 13 days of poking, prodding, testing and scanning before a heart scan (an echocardiogram) showed aneurysms in your coronary arteries. That is the day that the doctors diagnosed you with Kawasaki Disease. The treatment (intravenous immunoglobulin (IVIG), aspirin and steroids) did not work, and you were given a second dose. The inflammation continued to wreak havoc in your body and the damage to your heart worsened to the point that the Children’s Hospital were no longer able to care for you. You were transferred to the Cardiac High Dependency Unit at Leeds General Infirmary, where I was told to prepare for the worst. The last chance to save you, was a drug called Infliximab. We got special permission from NHS England to give you the drug, as it was not licensed for use in babies as young as you. Thank God for that, because it was that drug that finally stopped the disease in its tracks. It couldn’t reverse the damage that had already been done to your heart, but it prevented it from getting any worse.

In total, we spent 6 weeks in the hospital, finally returning to Sheffield from where you were eventually discharged. I wanted you home, but I felt so safe with you in the hospital, with the monitors warning us of any danger, and I was scared to leave that behind.

We had your cot in our room, just like we did with your brother and sister, only we kept you with us for a lot longer than we did them. I couldn’t allow you to be out of my sight, and I laid awake every night for the best part of a year, afraid to go to sleep. When we did move you into your own room, I kept your baby monitor by the side of my bed where I could be sure to hear every murmur. You were at risk of a heart attack, or aneurysm rupture, and I was terrified that we could lose you in the night.

We had baby monitors with the other children too, but by the time they reached around 2 years old, and the monitors packed in, we were happy to throw them away and move forwards. It was different with you. When the monitor broke, I thought about whether I could live without one like I had with Eliza and Fin, but the thought of it made me so anxious that I went out to buy another. This time, it was one with a screen so I could see you as well as hear you. It gave me comfort, and enabled me to start sleeping again. Even after the angiogram in 2018 told us that things were looking good, I still couldn’t bear to part with the monitor. It wasn’t doing anyone any harm, although I did wonder how long I would need it there as a crutch, and what I might do when it stopped working.

Fast forward to 2020 and the reason for writing to you today! Last year, the world was hit with a global pandemic. COVID-19 was killing tens of thousands of people across the globe and we learned to live a new normal of social distancing, face masks and lockdowns. And though in the beginning, I was petrified of the potential impact of COVID-19 on you should you catch it, the worry began to wane as the months passed and life started to get back to ‘normal’. Then, one night, we didn’t realise the monitor had switched itself off. And instead of feeling terrible, and anxious, I actually felt calm. We had made it through the night without it.

We have made it through many nights without it now. The one in your room is still in place, and the parent unit is not too far away should we ever need it, but it is no longer necessary for a good night’s sleep. I am sure if you are ever poorly, or when you go for your next cardiac procedure, we will get it back out of the drawer, but for now we don’t need it anymore. We are ready to live a life unmonitored, free from Kawasaki Disease and bad memories and fear. I won’t ever forget what you went through, and we will never become complacent about your little heart, but we no longer live in the shadow of that insidious disease.

For all the sadness that disease brought us, what we have achieved as a family since then has well and truly banished KD into the shadows. You have helped to raise awareness of the illness, inspired me to write and to run, and you have raised tens of thousands of pounds for research into the disease. But more than that, you have taught me how to love and how to appreciate the wonder of this simple life we live.

There was a time when the 31st May would send me into a melancholy state, ruminating on the past, not meaning to wallow but finding it impossible to ignore. I can’t say I’ll ever forget our journey with Kawasaki Disease, and the dates will always trigger a tiny bit of sorrow, but today I choose to celebrate the wonderful, amazing, charismatic little lady you have become.

I love you with all of my heart, and I will never stop being in awe of you. You have achieved more in your little life than most will in a lifetime, and you should grow up feeling powerful and proud. Don’t ever forget to look after that precious heart of yours, but remember that you are not defined by what that disease did to you.

I love you, peanut.

After your illness, I took you to the Bronte Parsonage Museum in Haworth. You know why it’s special to us – you are named after Emily Bronte, and it is our happy place because it was one of the first wonderful memories we made together. The top picture is from that day in 2015, and the one below is from yesterday when we went back to create more precious memories.

5 thoughts on “A Life Unmonitored

  1. This is so beautiful Jo. All the emotions stirred memories of the KD journey our family went through. Its wonderful to hear you can now live without the monitor! I send love to you and Freya and thank you for allowing me to share the wonderful things you I have written over the years. A big thank you too for everything you have done and still do to raise awareness of KD. Xx

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    • Thank you Anne! We were talking about you on our way back from Haworth on Sunday! Freya said “We’ve been through a lot together haven’t we” and I told her all the extraordinary things she has done in her little life – including inheriting a KawaGranny who named a sheep after her 💕

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