I know there are a lot of New Year cynics out there who like to belittle the idea of making resolutions for change, and believe you shouldn’t wait for the turn of the new year to make changes that are important to you, and in part I agree. But there’s something about approaching the end of a new year that makes you reflective, and I find myself thinking over the past 12 months and how the coming year might be different.
Every day spent on this Earth is an opportunity for growth. Things happen every minute of every day – some small enough to go unnoticed if you’re not paying attention, some big enough to change you or your life forever. Much of life is made up of the many moments somewhere in the middle; those straight bits of track on the rollercoaster that leave you guessing whether there is a rise or a fall at the end of it. And so it stands to reason that each of us will have changed in some way over the last year. Some things will have made us stronger, happier, more content or appreciative of the life we have, some will have made us question our existence. Some things might have caused a fissure in our hearts that might make us a little more sad than we were before, and some will have broken our spirit, deeply hurt our souls, or left us alone or without loved ones. Some of us might have experienced all of those things and will be a different person to the one that started out this year. If you believe you haven’t changed at all, then know that if nothing else, you are another year older. You have survived another year in this wonderful, confusing thing called life, and are a step closer to the time you will say goodbye to it or someone in it. Time slips through our fingers like sand in a timer, except we have no idea how long our sand will last. So as much as I think it must be lovely to go through life without over-thinking the journey or the destination, I actually like to take the opportunity to consider what I have learned, and how I might allow that wisdom to change how I might live in the next year.
I’m not talking about the usual stuff like stopping drinking, going on a fad diet, or pledging to join a gym (although I’d be lying if I said that choosing a healthier, fitter lifestyle wasn’t on the list somewhere). No, I’m talking about reflecting on the things that prevented me from being the person that I wanted to be, the things that happened that I had no control over, and considering how I might handle those challenges should they face me again in the year ahead.
2018 has been a strange year for me. Strange because although I know that I had lots of good experiences and special times, one event had such a negative impact on me that it has overshadowed much of the joy of the last year. If you were to ask me what the most memorable moment of 2018 was for me, it wouldn’t be the lovely week we spent at Centerparcs with our family, or the look on my children’s faces when they arrived in Disneyland Paris. It wouldn’t be the people I’ve met ‘virtually’ and helped from afar to deal with things I’ve been through, and it wouldn’t be my eldest daughter’s face when we told her we had tickets to see her favourite band, or finally getting somewhere in understanding our son and his challenges. It wouldn’t be the angiogram that our youngest daughter went through in the Spring and the day we heard her heart was looking good after three years of worry. That said, I must admit to a smile as I write these things, because I had almost forgotten some of them. No, the thing I will remember 2018 for, the thing that has sadly defined the last year for me, is the end of my 20-year career with the company that I had basically grown up working for.
Redundant is an awful word. For me it says surplus to requirements, unwanted, unneeded, worthless. The dictionary definition includes words like unnecessary, superfluous, needless, dispensable, disposable. Perhaps if my personal circumstances were different, I might have seen it as an unexpected opportunity, and I guess in some respects it may be, but what it did was shake the foundations upon which my life was built, and with me being restricted to working around my children and their not insignificant challenges, I am in a state of uncertain, unpredictable limbo as I try to work out who I am or what I will do next, because I’ve never known anything else. At 43 I know that I am unlikely to give as many years to another company again, and that makes me feel sad; that one of my proudest achievements is over and will never be replicated.
But, I cannot control or change what has already passed, all I can do is to work out how to take control of my future. I’m not sure how to do it yet. My self worth, confidence, pride have all been diminished by the experience, and whilst I may not know exactly how to set about rebuilding those things right now, what I do know is that I resolve to rebuild them. I cannot allow it to step across the threshold of a new year and take any more from me.
A wise friend recently said, “The redundancy has knocked you, but I think you have an amazing opportunity…Find something to engage your mind, and see where it leads you…procrastinate…try things out…dip your toe”
And those words got me thinking about the year ahead. I guess you could call it a New Year’s Resolution – it’s a decision to take the lessons of the last year and use them to reshape me into the person I want to be going forward. In 2019, my goal is to remind myself that thoughts are not facts, and my circumstances are not who I am. I know I don’t have to have it all worked out today though, I just need to know what my goals are for the year ahead. I have a few things I would like to achieve, but I’m keeping those just for me at the moment, so for now I will just say that what I am hoping to leave 2019 with is clarity, purpose and peace.
Happy New Year!
So, we finally acknowledged that angiogram shaped elephant in the room, and on Wednesday 21st February 2018, almost 2 years to the very day that the ‘A’ word was first mentioned to us, you underwent cardiac catheterisation at Leeds General Infirmary. And you are still here! Woohoo! I could feel all the fear and worry that has burdened my shoulders for the last few years lift off and evaporate in the waiting room the moment I saw the Cardiologist’s face as he walked towards us, smiling.
Let me tell you about the day so you can read about it when you are old enough to understand what you have been through. Although I feel that somehow instinctively you know, because you have not stopped squealing “Woohoo!” since we got home!
Our day started at 6am, when I woke to my alarm with a sinking feeling in the pit of my stomach. ‘A’ day had arrived; a day I had been dreading for so long. Before I woke you, I called the hospital ward to check they were expecting you and that they still had an available bed. “Yes, we are expecting Freya,” said the nurse, and my heart sank. I climbed back into bed with Daddy, and cried quietly as I let it sink in. I know it had to happen, but I was as disappointed that it was going ahead as I had been at it being cancelled a few weeks before. It was indeed a necessary evil; we wanted you to have it, but we didn’t want you to have it. But now we just needed to get on with it, and have hope. I put the angel wing earrings in that our friend had bought me, and although I don’t think I am a religious person, and I am not a Catholic, I will admit I popped the rosary beads that I had bought in The Vatican into my bag!
I woke you up, and after you’d sleepily been to the toilet, I wrapped you up in your dressing gown and put you in the car. Our overnight things had been packed the night before, as we were told to expect to stay at the hospital. You weren’t allowed anything to eat or drink after midnight the night before, so we were surprised when your first words weren’t, “I need some brukfust!” like they usually are! I guess the whole routine was different to you. As usual, and despite being rudely awakened at 6am, you were happily chattering away in the back of the car, telling us about everything you could see on the journey up, and repeatedly saying, “We love you, don’t we Mummy,” which just made my heart ache. It struck me as strange that you used the word ‘we’ and I got this odd feeling that somehow we weren’t alone, us three, on that journey.
When we arrived in Leeds, Daddy dropped us off at the doors and went to park the car so that we wouldn’t be late. Although we visit this hospital regularly for your follow up appointments, I felt my stomach lurch as we walked in. Usually your appointments are in the Outpatient’s Department, but this time we would be going back to Ward L51 in the Clarendon Wing – the ward where you were admitted when the Children’s Hospital had you transferred up there for specialist cardiac care. We entered the ward, and right ahead of us was the high dependency unit that you had shared with post-op babies with vertical scars down their chests. I had been so focussed on the procedure itself that I hadn’t considered how it would feel to be back there.
We were ushered into the playroom, where within minutes the Doctor had arrived. He was in blue scrubs and he spoke in a calm and kind way that put me immediately at ease. He explained that you would be his first patient of the day, so you would be going down for your procedure at around 9am (it was 7:30am when we arrived). He gave me a brief outline of what would happen, and explained the risks in such a way that I didn’t feel afraid of them anymore. He said that both me and your Daddy would be able to go into the room when you were given the general anaesthetic, which made me really happy as the last time you were put to sleep I had to go through it on my own. With every sentence the Doctor spoke, I began to feel stronger. Daddy then arrived, and the Doctor took the time to repeat the information to him, and I signed the consent forms. He said that if everything went as they expected it to, we should be able to go home that afternoon. He also said that the day needed to be as fun as possible, and that both the hospital staff and us were to concentrate on that, for your sake. He said, “This doesn’t have to be frightening for Freya, she just needs to think that this is normal.” I didn’t think it was possible for us to do that, but as you will read, we all pulled it off!
Shortly after the Doctor left, a nurse arrived to show us to your bed. As we were headed towards your bay, the nurse said we just needed to nip into a side room to check your weight and height. I looked around the room, trying to figure out why it felt familiar. It looked smaller than I remember it. More cramped. And yet the last time you and I were in there, it was full of medical professionals and the ambulance crew were poised in the corridor, waiting to see if you would be taken back to Sheffield. They were sent away. I can remember Dr Brown (your Cardiologist) sitting by the side of the bed preparing to do an echocardiogram. I don’t remember any of the other faces, just that they looked intrigued, serious and concerned. And I remember I was in such a heightened state of panic as you had got so hot in your car seat strapped to the ambulance gurney and your fever still hadn’t abated after 17 days. For a moment, it was like I was watching it all again, like a kind of out-of-body experience, but then you needed help to get your back straight against the wall so the nurse could record your height, and I snapped back into the moment.
Within minutes of arriving at your bed, two members of staff came to see you. One was the Anaesthetist and I can’t remember who the other lady was. I was surprised at how they addressed you to explain to you what was going to happen. I remember thinking, “She’s only 2! She can’t understand what you’re saying!” but I realise that they were building trust and forming a relationship so that the experience would be easier for you. They said they would see you soon for a little sleep, and just in case you didn’t respond well to the breathing mask they put some numbing cream on the back of both hands with a clear plaster to cover them. Although you giggled at the coldness of the cream, you didn’t like it much and we had to tell you we had the cream on too to convince you to get the other hand done. They wrapped your hands up in bandages so you looked like a boxer, and the probe on your finger lit up so you looked like ET (you won’t know who that is, but we will watch the movie one day).
When they were done, the Play Nurse arrived! Her name was Gemma and she was wearing a bright yellow T-shirt. She had a big bear with her, I can’t remember his name. He had a cannula in one hand, and a clear plaster on the other, and the nurse was carrying a green mask. She gave you the bear to play with, talked to you about the cannula and let you play with it, and she gave you the breathing mask to play with too. Me and Daddy played with the mask as well – we put it over our mouths and pretended to fall asleep, snoring! You thought that was funny, and you helped put the teddy to sleep too. After you’d had a chance to play with the teddy, and Gemma had talked to you about your procedure, she asked what you would like to do next. You chose to do some painting, so all three of us sat at the little table and painted together. As the time passed by, it didn’t feel like we were waiting for anything at all. It just felt like you, me and Daddy spending some lovely time together! Personally, I found the painting quite relaxing, and I couldn’t believe it was 9am already when another nurse came through to collect you. They were ready for you.
You didn’t want to stop the painting, but we explained that there was somewhere exciting we needed to go, and that you were going to have a little sleep. You could come back to do some more painting later. So off you skipped down the corridors, stopping every now and again to look back and ask us which direction we should go in. We went down in the lift, and walked for ages until we finally reached the Cardiac Catheter Lab, which was through some red double doors. We went into a room on the left, and could see the Doctor and another member of staff behind some glass. It looked like the kind of operating theatre that you see on TV hospital dramas, and Daddy and I were surprised by how many people were in the room. I was expecting to lay you down on the bed like the last time, but instead they asked me to sit down in a chair, with you on my knee facing away from the bed. I guess when you last went under general anaesthetic you were just a tiny baby, and you were so sick that you really didn’t put up a fight at all. This time, with you being so much more aware, I guess this was the better way. When they held the mask over your face, you didn’t protest. How clever that they introduced you to it earlier on, so now you just accepted it as normal! They asked you to breathe, and to try and blow up the balloon that was attached to part of the tube. You started to feel heavier in my arms, and at one point you started to throw yourself about a little. The anaesthetist said not to worry, that it was the general anaesthetic working and was quite normal. And then you were asleep, which I knew because you started snoring really loudly! I’ve never heard you snore like that before, Pickle! I laid you on the bed, and they said we could give you a kiss goodbye before we had to leave. Daddy leaned in and gave you a kiss, and then I did too. I’ll admit that is when I began to cry. We had been so strong for you, it wouldn’t do any harm to let it out now that you couldn’t see us. They told us to come back in 30-40 minutes, and we had a feeling it could be one of the longest 40 minutes of our lives.
Daddy and I went down to the hospital entrance to get a coffee and some breakfast. Daddy said he felt bad getting a bacon sandwich when you hadn’t eaten, but I told him it was okay because you didn’t know! Standing in the Costa queue, I turned to your Dad to ask if he was okay, and he was really upset. We don’t often see your Daddy cry, but seeing your child get put to sleep is not a nice thing to go through, and it really hit him. We sat and ate, and I just felt an overwhelming sense of sadness over our situation. This had never been in any of our plans, and here we were drinking coffee, in a hospital surrounded by Surgeons and Doctors and Nurses on their breaks, while somewhere upstairs your life was in someone else’s hands. I felt helpless, and heartbroken that you were having to go through this at all.
After what felt like 58 million hours, we decided to come back to see if your procedure was over. My heart jumped up into my throat every time those red double doors opened, but it wasn’t long before your Doctor came through them and walked towards us with a smile and a nod that seemed to stop time. He sat down beside me and your Daddy and said that the procedure had gone really well, and then he said it. Your arteries look “pristine”. That is the exact word he used: pristine. Now if you don’t know what that means, and for the purpose of illustrating just how amazing this news is, let me share this with you here:
Unspoilt, perfect, immaculate. Just like you.
We couldn’t believe what we were hearing. Daddy said “It’s what we wanted, it’s what we wanted!” as the Doctor told us that everything looked normal, and they could see no signs of any damage at all. Normal! Do you hear that! He said he would keep you on the daily aspirin, but I said that your Cardiologist was keen to stop it if there was no need to continue. He agreed that there was no real evidence either way, so the decision would be as much led by us as by the hospital, and we decided we would wait to see what Dr Brown would like to do. I said I had not expected to hear such amazing news, and wondered if the fact that you were so young at diagnosis had anything to do with the outcome. He agreed that babies, and young children, are remarkable healers. He said that you would need to go back in the future for a stress echo, but for now everything was just fine! You were waking up, and a nurse would come out to collect us when they were ready.
When the nurse came out and lead us through the red doors again, we could hear you screaming. We entered the recovery room, and there you were, confused and upset and fighting with the staff who were trying to apply pressure to the entry wound to stem the bleeding. The more you struggled, the harder you made it for them, and you were writhing about on the gurney trying to get away. It must have been frightening for you, and I am guessing it might have been hurting too. I’ll admit I wasn’t prepared for the recovery. I hadn’t expected to find you like that, and both me and Daddy went right into action to try to help you. You were calling for us, and we were reassuring you that we were there, but you were in such a state. You asked for a cuddle, so Daddy held you on his knee in a chair whilst the nurse tried to keep the pressure on your groin area, where the catheter tube had been inserted. Then you started calling for me, and Daddy passed you to me, but you were still very unsettled. And then the nurse said they had to get you laid down again as you were bleeding out, and I looked down and saw the blood stain spreading across my cream jumper (my favourite jumper might I add!) Then I panicked, and I cried, and I said “It’s my fault, it’s my fault, I wasn’t holding her right!”, and they told me not to worry, that they expected the bleeding, and it wasn’t the first time it had happened. In fact they apologised to me for the state of my clothes, but I really didn’t care, sweetheart, a jumper can be replaced. The Doctor who performed the procedure came back in to help, and eventually the bleeding must have stopped because they called for a porter to come and take you back to the ward. It was hard to see you so upset, and us not be able to offer much comfort. Most of the journey back to the ward, you were calm, but then we would stop to open a door, or call a lift, and you would start crying again. I wonder what was going through your mind. I reminded you of the CBBC Get Well Soon video we watched where Dr Ranj was singing about a bed with wheels, and you smiled a little at that.
We were soon up on the ward again. They told us you wouldn’t be able to eat for a while, particularly as vomiting can be a side effect of the anaesthetic, but that you may want to have some sips of water because your throat may be sore. We had to get you to lie flat for a number of hours – how do you manage that with a toddler! But actually you were pretty whacked out by the experience, and you did lay there with your favourite teddy, the teddy that had stayed with you in the theatre when they did the angiogram. I budged you over on the bed, and snuggled up beside you so we could read books, which I held above our heads until my arms ached! You kept sending Daddy back and forth to the library to fetch new books, and he kept going because it was the least we could do to keep you happy after what you had been through. My advice to a parent going through this with their child to pick lightweight books! You wouldn’t have wanted to hold the book yourself – you were too busy sucking your thumb on one hand, and fiddling with Pink Teddy’s ears with the other! You had a probe attached to your foot to monitor your heart rate and oxygen levels. I watched the numbers on the machine, and noticed the stark contrast between the monitor then, and the constantly alarming monitors of 2015. My, how far you have come!
I guess it was around 11am by the time we had got back to the ward, and you still hadn’t eaten anything since 6pm the night before. You were getting hungry, but it was too early to eat so we told you that your lunch was cooking, and distracted you with more books. Whenever a nurse walked by you would shout out, “Doctor! I’m starving!” Soon enough it was lunchtime, and being a paediatric cardiac ward the offering was jacket potato and baked beans, the suggestion of which was met with a rather indignant response from you, and a request of “Have you got any cheese sandwiches?” Despite not usually serving that, the staff went off and came back with a plate of cheese sandwiches, a yoghurt and a banana that they had made to look like a dolphin. They all made such a fuss of you, and all the staff said you were very cute. You even made a friend – 8 year old Emily who was waiting for open heart surgery. Once you had eaten and you were able to sit up, it was like you hadn’t been through anything at all. You were back to being your usual self, a cheeky little chatterbox, charming everyone that you met! The rest of the afternoon was pretty uneventful, and because you could sit up you were able to open the gift that ‘La La Lis’ had sent with us, with treats and activities inside, which kept you busy for a while.
The Doctor came to see us again in the afternoon, to say that he was happy for the nurses to discharge you when they were ready. You had recovered well, and the only sign of what you had been through was the nasty bruise in your groin that w
ill probably be there for some time. He repeated that everything had gone really well, and that your heart looked perfect. He mentioned the stress echo again, and we asked how old you would need to be for that – he said at least 8 years old. I asked about CT Calcium testing as I know that research has shown that the presence of calcium in the arteries can indicate risk of further complications, e.g. heart disease. This test is recommended 10 years post-diagnosis, as calcium can take years to build up. The Doctor did mention the ‘D’ word (discharge), but I quickly jumped in to say that I would expect you to be followed up for life, and he didn’t argue.
And so, around 5pm, after a long but strangely fun day, we were told we could go home. I asked Daddy to go and get the car, and I would meet him around the front of the hospital; there was something we had to do…
On Friday 18th June 2015, as we were leaving the Cardiac unit to return to the Children’s Hospital following your week on the HDU, I made a visit to the hospital chapel. Your Auntie had mentioned that she wanted to leave a prayer before we left, but we were discharged before she got the chance. So I decided to do it for her. The day before that we had been told there was a chance we could lose you, so I knew what I wanted to write on my prayer slip. Dear God, Prove them wrong.
On the 22nd February 2016, your Cardiologist told us that they wanted to do an angiogram, and the start of a worrying two years began. That night, I wrote a blog, where I shared a photograph of the prayer slip along with these words:
“Somewhere in there…there is a tiny voice of hope…She sounds how I imagine Freya to sound in a year or so. I see those eyes through the fog too. They are looking at me, huge and wide, and they are saying “I’m going to be ok, Mummy.” This kid is miraculous. She is made of something stronger than you and I were made of. Maybe, just maybe, she is going to prove them all wrong…”
And on the 21st February 2018, after we had faced the elephant in the room, and survived, you and I went to the chapel together. I took a blank prayer slip from the table and wrote what I needed to say. And then we walked up to the altar and both of us said out loud, “Thank you.” And we meant it from the bottom of our perfect hearts.
We also left a note on the prayer tree for the research team
Our journey with Kawasaki Disease is not over, we have merely reached a pretty big break in the road. The distance between the follow up checks will become greater, perhaps 5-yearly from now, and we will have a number of years to wait before the further tests (stress ECG/echo, Calcium CT test and perfusion scanning) are undertaken to ascertain the risk of long-term effects on your heart. Although the remodelling process can be excessive and lead to narrowing (stenosis) at a later stage, we remain cautiously optimistic for your future. We know you are at greater risk of heart disease and will do our best to protect it, as the doctors have advised; healthy eating, no smoking, and get you into an activity now that will keep you physically fit into adulthood – cycling, running, swimming or dancing. Oh yes, there will be lots of dancing!
I e-mailed a number of the Kawasaki Disease specialists who have been on your KD journey with you from afar, including Professor Jane Burns (World Leading Kawasaki Disease Specialist). Whilst they all celebrated our news, the cautionary notes were still clear. “Make sure she has ongoing and long term follow up and that no one is tempted to discharge her!” was the note from one of the specialists, and another said “While I hope the later narrowing will not occur – it is important to be aware that it’s possible and arrange long term follow up.” Jane didn’t need to say any of that, as she knows me too well, and knows that I will never stop advocating for you and the disease, so this is how she received your wonderful news:
You can count on it Jane! Whether we like it or not, we are part of a wider family now, and we will never stop campaigning to raise awareness of this disease. Freya’s 3rd birthday party fundraiser is on the horizon, and we can only hope that whatever amount we raise can make a difference to the research programme. For now though, our family can focus on that ‘normal life’, although I am not sure I am satisfied with ‘normal’. No, for us I want an extraordinary life, and the hope that we have gained from seeing that sometimes you can believe in miracles might help us do just that.
My dearest Freya,
It’s been a long time since I’ve written to you. Life has moved along steadily since those dark days of 2015, and there’s not so much time for blogging these days. And in all honesty, the fact that there’s not so much to blog about can only be a good thing. No news is good news, right?
So why am I writing to you today? I’ll tell you. I’m writing today because if I don’t say these things out loud they are going to continue to consume me as they have for the last 2 years. Since the A word was discussed. Angiogram. The word itself has become so huge to me now that I’ve lost all perspective for what is considered a routine procedure. Routine for the cardiologists who perform them day in and day out, month after month, year after year. But not routine for you! This was not part of our plan for you.
But, we’re here. And despite being cancelled twice already, it is looking pretty likely that at 6:30 tomorrow morning we will be waking you to make the drive to the hospital and allow the wheels to roll.
I’m sure many would think me over-dramatic. Many have been through much worse. But this is an invasive procedure, and it involves your precious heart, so I am more than a little terrified. And whilst I promise you that I am doing my very best to be hopeful and think positively, I will never be able to shake the fear I have of this particular procedure. The elephant in the room at every appointment with your consultant for the last 2 years. The one we fought against, advocating for you to grow stronger before they put you through it. See, it’s pretty standard for an angiogram to take place one year post a KD diagnosis, but with you only being 7 weeks old when you were struck by Kawasaki Disease, at a year post diagnosis you were still just so little.
I feel like I need to offload some of my fears here so that I can start to move forward from them. I did wonder if committing them to the page would somehow allow the fears an unnecessary validity, and make things worse. What I’m hoping is that I can share just how I feel about this procedure so that when we come out the other side of this I can truly appreciate how unnecessary my fears were and learn that fear is not truth. Oh I hope I’ve got this one right.
Of course I’m afraid of the procedure itself. It is routine, yet it is still invasive and it is not without its risks. But I’m afraid of so much more than that.
I’m afraid of the hospital. It was there that your disease was finally silenced, but it was there that we were prepared for the very worst we could have ever imagined. “Are you aware of the risks, Mrs McBride?” And I replied that I was and started to reel off those risks – clot, stenosis, heart attack…. “Shall we go and have a chat?” Never good when your child’s Cardiologist invites you to talk away from the ward. A conversation I will never forget, where behind a closed door I would hear the words, ‘rupture’ and ‘nothing we could do’. Where I first heard that their greatest fear for you at that time was one that would see me leave that hospital alone.
I’m afraid of the general anaesthetic. I watched you go to sleep when you had to have a bone marrow aspiration before they reached the diagnosis. I couldn’t help thinking that this was how it would feel to watch you die. I’m sorry, I know it’s morbid, but I’m just trying to be honest with you about my feelings. Honest with myself. I didn’t think it was likely I would ever have to go through that with you again. But here we are, and tomorrow I will be there (if they let me) to watch you go to sleep before I hand you over to the care of the Doctors and wait the agonising wait for the call to bring us back to you. I dread the moment, but I know I have to be the last person you see before you close your eyes and I need you to know that I was there by your side for as long as I was permitted.
I’ll admit I have Googled the procedure many times and that means that I am fully aware of the risks, however small those risks may be. Of course I’m afraid of those. I’m afraid of all of those. Every single one.
But most of all I am afraid of my dreams. Because I have seen this played over like a video in my mind since it became a ‘thing’ for us. I have had many nightmares where the doctors bring me the worst news of the worst possible risk outcome. Irrational, maybe. But those dreams have been the kind that are so real you question whether you were really dreaming for a moment. You see, I’ve felt the grief. I know I haven’t lost you, but I’ve felt many times as though I had. So there it is, I’ve said it. My greatest fear is that my dreams, nightmares, become the reality. And that is why I am so reluctant to accept this procedure as a necessary evil. Because I am absolutely terrified of what those dreams showed me – not as visions of a madwoman, but as nightmares playing on an anxious mind.
I felt strongly this evening, on the eve of the appointment, that I let those fears fall onto this page. Fear, I acknowledge you. It is ok to be afraid. I am afraid because the one thing I fear the most in this life of mine is losing you, little Freya. The fear is what shows me how much you mean to me and how much you are worth fighting for. So let’s kick Kawasaki’s butt tomorrow, sweetheart! Let’s see if that message I wrote to a God I’m not sure I believe in, comes true. Prove them wrong!
Have courage always, Peanut xx
Over the past two years, I have used my writing and my desire to make a difference to raise awareness of this little known illness called Kawasaki Disease. It all started with a journal that I was given whilst my daughter was in the hospital, a journal whose pages I would fill with thoughts and feelings every night whilst I lay there on a camp bed by my daughter’s side, a journal that would come home from the hospital 50,000 words richer.
Since I began sharing Freya’s Story, I have received many compliments about my writing, or my dedication to the cause. I’ve sometimes been called an inspiration! And whilst I enjoy those compliments very much, the words and comments leave a bitter-sweet taste because they are compliments I would rather not have been in a position to receive. At times I feel like a fraud, particularly when people say that without my perseverance, Freya might not have been here today. Those comments make me feel like a fraud, because in the beginning, in that first week of Freya’s illness, I did nothing. Nothing.
Freya had just passed the 7-week milestone when she became sick. Up to that point we had spent some pretty uneventful days at home, where I lapped up the new arrival. It is no secret to those of you who have read my blog from the beginning, from before Freya was born, that I was not particularly happy when I discovered I was pregnant. With two children, aged 11 and 6, I already had the family I wanted. I was approaching 40, and had just obtained my biggest promotion at work. I couldn’t believe that I had gotten myself into such a mess, and in all honesty the pregnancy severely affected my mental health for some time. And then over time my feelings settled, and I began to look forward to the arrival of our little girl. It felt somehow that she was going to change things dramatically, that she was going to change me. Boy, did I get that right! I will never forget the moment that I held her for the first time – I wanted to hold her so tight that I was frightened that I would squash her. I remember asking the midwife over and over “Am I hurting her? Am I hurting her?” and they laughed and said of course I wasn’t! I had been there twice before, but this was different. Like somehow the journey I had been on through the pregnancy made her arrival so much more poignant. She was a gift; a gift that I had failed to acknowledge for much of the time that she was growing inside of me, but my love for her once she arrived was more than strong enough to make up for that. I was smitten.
As I’ve already mentioned, those early weeks went by pretty uneventfully. I had to remain in hospital with Freya for a few days after the birth as I had tested positive for Group B Strep during the pregnancy and had to receive intravenous antibiotics during labour to prevent the infection from being transferred to the baby. Getting those antibiotics in time was a huge source of anxiety for me. Throughout the pregnancy I had been plagued with thoughts that my baby would not arrive, and when I discovered that I was GBS+ and learned of the associated risks to my baby, I felt I had met her killer. But once she was here, and we had the all clear to go home, all of those worries disappeared. Having learned the hard way from rushing to be supermum with the other two kids, this time I spent most days laid on the sofa with Freya in my arms, developing a bond like I have never known. I watched movies as she slept on my chest, and I can remember only the sweet joy I felt from being in her company, just us two. The first real adventure we went on was a trip to Cannon Hall Farm, a local visitor attraction. That was on Saturday 30th May; Freya became sick the next day*
*The cause of Kawasaki Disease is still unknown, despite 50 years of research. There is no evidence that I am aware of, of any connection between Freya’s illness and our visit to the farm, and I wholly believe that the timing was purely coincidental. That said it took us a long time to return there, mainly because of the pain of the memories of it being our last day with our healthy baby girl.
Freya’s illness initially manifested itself with a loss of appetite. She awoke in the early hours of the Sunday morning, but she seemed to have a cold and was struggling to take her milk with her nose so snuffly. I tried for a while, but she just fell asleep with the exertion so I let her sleep until she next awoke. It was after the refusal of the next feed, that I became concerned; not because I thought she was ill, but because I was worried about her not feeding. That’s when I noticed her temperature. It was my intention to give her Paracetamol, but when I saw the bottle said ‘from two months’ the goody-two-shoes in me wouldn’t let me give it to her without seeking medical advice. So it wasn’t instinct that made me call the doctor – it was my conformity to rules! Nevertheless, the call was an important one to make and the out of hours doctor said that I should take her to A&E as it was unusual for a baby of her age to have a fever without an underlying reason. That’s when I remembered the GBS – my worst fears were becoming a reality and the word ‘meningitis’ seeped into my subconscious.
At the hospital, they checked Freya over and could see that she was working pretty hard to breathe (you could see her little tummy moving up and down instead of her chest), and the fever was soaring. I remember telling them about the positive GBS result, and that she had been born within such a short time of the antibiotics being administered. We went up to the children’s observation unit with her where we held her practically naked body as she slept in our arms. I remember having to obtain a wee sample, which involves catching a wee in a kidney dish – no mean feat with a tiny baby, and we celebrated when we managed it! What happened next is a bit of a blur, but I think because of her symptoms, and my warnings about the GBS, plus the standard protocol to treat a feverish infant for meningitis as a precaution, they decided to admit her to a ward and give her intravenous antibiotics and antipyretics.
I know I have told you all that already in previous blogs, but I’m telling it here to illustrate the point that this wasn’t because of my instincts. We were here because of the instincts of the medical professionals that this tiny baby was just too precious to send home.
If you’ve read my blogs you will also know that after the medication had been administered I laid Freya down in the hospital cot and tried to get some rest in the chair in the corner of the room. You might recall that as I laid her down, I could smell that she had dirtied her nappy, and you’ll remember that I chose to ignore it, to allow my exhausted baby to sleep without disturbing her again. You’ll also know that I hadn’t sat back down in the chair for any more than a few minutes before I decided I could not let her sleep in a dirty nappy, and rose from my seat to change her. She would sleep better if she was clean. Was it instinct that got me out of that chair? No, I don’t think so. I think it was common decency and a conscience. Whatever it was, it was the single most important decision that was made, because as I changed her nappy I noticed that her body was covered in a rash. I hadn’t noticed that Freya was unresponsive when I changed her nappy. She was sleeping, but I was pretty adept at changing nappies without waking the baby – I was like a ninja! I can’t remember if she felt different. I called the nurse, the nurse called the doctor, and from that moment I was introduced to a whole spectrum of feelings that I will never forget and never want to endure again. I can’t remember much at all, except the way the atmosphere in that room changed when the doctor and also by then a consultant, uttered the words “shutting down” and started to wheel my baby out of the room.
Two years on I can still see myself standing in that corridor in utter shock. It was like something from a TV hospital drama. It wasn’t real. I called my husband to tell him he needed to come to the hospital. I think it was around 6am. I had this sinking feeling that my baby was dying right there in that room, and I remember how alone I felt. I walked slowly into the high dependency unit where they were working on my tiny little girl, pumping her with fluid boluses to resuscitate her. I stood at the foot of the cot, my hands gripped around the bars, and just watched in silence as the doctors calmly gave orders to the nurses to hand them this, and pass them that. It was how I imagine an out-of-body experience to feel. Even now, I have to wipe away the tears at that memory.
Clearly they managed to stabilise Freya, but she was incredibly sick. They continued to keep meningitis at the top of the list, particularly as she had gone into septic shock. A number of different antibiotics were being delivered to her tiny veins through cannula sites in every place they could get one. We would remain in the HDU for 3 days, where Freya was considered stable but no better. The temperatures continued to soar, she was tachycardic (elevated heart rate), and she was being fed through a nasal NG tube. On the Wednesday (day 4) she was considered stable enough to move back onto the ward. All I remember about those days was how quickly I settled into a routine of getting up and showering in our en suite cubicle, before Freya would wake. I would try and sleep when she did, but I was too distraught to harbour much sleep. I chatted with the nurses as they came and went, and it felt like we had been there for weeks. I ate when family brought me food, but I rarely left the room. Sometimes at night, my best friend would come with reinforcements and entice me out for a break and some food. It was during those meals that I aired my fears to my friend; what if she dies?
Freya’s CRP levels (the markers in her blood that show infection/inflammation) were dropping slightly day by day. When she went in her CRP was over 340 (normal is under 7). I took the downward trend as a good sign, but hadn’t considered that even as it was dropping it was worryingly high. To give you some context, Freya wasn’t released until her CRP dropped below 7, which would be 6 weeks after she was admitted. I don’t know what I thought was happening. I think I believed that she had meningitis, and that she was on the right medication to treat her for that. She needed a lumbar puncture to be sure, but was too sick to undergo the procedure until the Friday (day 6). They took blood samples every single day, but none of them grew any cultures. Around the middle of the week, a nurse came in and said “You know they’ve found it don’t you?! They’ve found rhinovirus!” I remember feeling so silly! I had taken my daughter to the hospital with a cold! I think I must have been in shock, because I actually believed they would say “Mrs McBride, Freya has a cold, you can take her home!” Even with the heart monitor constantly alarming as her heart rate soared, even as her temperature continued to spike, even when she was unable to feed on her own, with cannulae in her ankles, her wrists, her head! Even when she stared at me vacantly from that cot, and I yearned for cuddles that I couldn’t give for fear of dislodging the wires and tubes. What was going through my head? It was like I really believed they would just switch all that off and let me take her home. And yet, deep down I knew that something wasn’t right. I still had an overwhelming fear that she was going to die. But I’ve been told all my life that I am a neghead, a catastrophic thinker, so I batted that away as irrational and ignored my instincts, even though the doctor’s faces betrayed their fear. I remember remarking to the consultant that Freya had rhinovirus, hoping that he would confirm how stupid I had been to worry. But his response was “Yes she does, but rhinovirus doesn’t make a baby this sick.” I think that’s when I finally allowed myself to believe what my gut was telling me; that Freya was gravely ill.
The lumbar puncture would come back negative. Elevated white blood cells gave them reason to believe she may well have had meningitis, but that the medication had already begun to work, but the test was inconclusive. I remember how scared I was when they told me to hold her after the procedure. They said I had to keep her flat – I was petrified that I would make a move that could cause her a serious injury. Every test she endured during that week she had me by her side. All but the lumbar puncture. For that, the nurses asked me to stay away, and to be there for the cuddles afterward. I took myself far away from the treatment room, but I knew my baby’s cries when I heard them, as they bent her tiny body into the position necessary to carry out the test. That would be the first of the three lumbar punctures they carried out, but the other two were done under general anaesthetic in theatre so again I wasn’t present.
It was on day 7 that I told my husband how afraid I was that the doctors weren’t telling me something. I said I could see the concern in their faces, eyes that betrayed their calm words. It was then that I asked my husband to meet with the consultant. He had to do it, as I needed him to ask them a question that I couldn’t bear to hear the answer to. I needed to know if they thought there was a possibility that she could die. That is when she told my husband that on a scale of 1-10, with 11 being dead, Freya had been a 10. My instincts had been right, and I just didn’t have the faith to believe in them. The following day, Freya would be transferred to the specialist children’s hospital as the local hospital had exhausted its investigative scope. I do recall the consultant saying that if it were his child, and they had been sick for 8 days without diagnosis, he would be demanding answers. He said that the children’s hospital would be able to scan Freya’s brain, and do an echocardiogram on her heart. Still no alarm bells rang for me – belts and braces, I thought.
It is worth stating that in that first week, the only notable symptoms were a fever that would not abate with the usual antipyretics (Paracetamol/Ibuprofen), and a rash. Freya’s lips were very red, sore and cracked, but this considered a symptom of dehydration with her being tube fed. I had commented that her ankles and wrists looked swollen, but it was attributed to cannula damage, particularly as the cannulas were constantly having to be replaced due to failure. The staff did not give me any cause for concern, and I didn’t therefore consider that all of these were possible symptoms of some strange disease. Why would I? I mean that kind of stuff happens to other people doesn’t it!
It was in that first week that I should have asked Dr Google’s advice. The fact that I didn’t will haunt me forever. Do you know what the top result is if I put this question in my search engine…
Question: “My baby has a fever, a rash and cracked lips.”
Answer: Kawasaki Disease – Symptoms – NHS
I didn’t ask Dr Google though, and I have no idea why not. Trust? Complacency? Ignorance? Perhaps all three, and other reasons too. I simply had no reason, or point of reference, to lead me to believe that I would need to look it up myself! We were in the hospital, surrounded by doctors and nurses with many years training and experience. You don’t ask Dr Google, you sit back and watch and wait and let the professionals do their job. You are in the right place, and they will make your child better. That’s how it works. Perhaps I had the instinct, but didn’t know what to do with it? Not once did the thought enter my head that my child could have something seriously wrong with them that the doctors were missing. Not once. I’ve literally driven myself crazy for two years asking myself why I didn’t see it. Why I didn’t ask the right questions. I’ll never get that answer, and will have to live with the consequences of that.
Perhaps if I’d read about this weird thing called Kawasaki Disease, I’d have associated the lips and the swollen extremities as symptoms and made them see? Perhaps when the consultant mentioned a heart scan, the penny would have dropped and I would have asked him, “Do you think she has Kawasaki Disease?” Perhaps if I had, they would have talked to me about it, and we would have agreed that she met the brief, and not for just an incomplete case as was finally diagnosed on day 13 of her illness. No, she had all the symptoms they needed for a complete diagnosis. My old boss once described me as being like “a terrier after the postman.” When I get a bee in my bonnet, I rarely let it drop. Had the KD seed been planted, I know I would have done so much research in those twilight hours when I dared not go to sleep that I would have made the connection. I know that when they did an echo on day 9 that showed no damage that I would have told them that didn’t mean she didn’t have it! 75% of children with KD don’t sustain any heart damage, and you can’t use a clear echo to rule the disease out! I know when the new rash appeared, that I would have recognised it from pictures I would have seen plastered all over the internet! There’s no mistaking it. I might even have known that young infants are more likely to suffer large and giant coronary aneurysms, that they are more likely to be resistant to standard treatment (IVIG) and that they are more likely to get a severe case of the disease that results in a dangerously low platelet count (thrombocytopenia), not the usually high platelet count that is characteristic of Kawasaki Disease. Had they decided to be open with me about their fears or suspicions, had they told me that KD was the prime suspect, I would have made them give her the treatment and not allowed them to rule it out. Which is what they did. They ruled it out on day 9, and she went through further tests including an MRI and a bone marrow aspiration in theatre, both of which failed to give them an alternative. I wonder how it felt to see her coronary aneurysms when they showed up on an echo on day 13….
Now that sounds like I am blaming the hospitals. Maybe I am? I don’t know. I do know that it wasn’t negligence on their part. They worked so hard to find the answers, and were thrown off the scent by this insidious disease. I know how important it was to them that Freya get well again. They know I was angry, in fact they told me how upset they were that I was angry with them because they felt that they did everything they could. I won’t lie. I will always feel angry that they were looking for it and still allowed themselves to be misled. Could they have known more about the disease? Enough to give them the conviction to go with a diagnosis regardless of that first echo? I know they had to make certain decisions, and that the treatment for KD could have proven catastrophic had it had turned out to be Leukaemia as they had also suspected. And no amount of blame will change where we are. What I am thankful to them for is how they treated the illness once the diagnosis was confirmed. Their aggressive treatment of the disease and their over-cautious approach to monitoring from that moment was fundamental to her recovery, and I truly believe that their actions from that point saved her life. I will always question the decisions made by both hospitals leading up to Freya’s diagnosis, perhaps because it would feel easier if I had someone to blame, but their actions afterward more than make up for any misjudgement.
Perhaps it’s one of the reasons why I can never forget those early days in the hospital? Perhaps it’s the main reason why I do what I do to raise awareness of the disease? I cannot bear the thought of another parent feeling the regret that I do over questions I should have asked…
Whatever the reason, I know that I will always wonder if I could have helped my daughter get an earlier diagnosis and more timely treatment. I will always wonder if I could have stopped her heart from breaking. I can’t change what happened to her, but perhaps I can swallow some of that guilt and grief if I can change it for someone else. So know the symptoms! Let our story show you how important it is to advocate for your child. Ask questions – direct ones! What do you think could be wrong with my child? Make them tell you what they are thinking! And when you get some idea, and you think your child is displaying symptoms that give you even the remotest possibility of this disease, then ask them this…
“Tell me why it ISN’T Kawasaki Disease!”
It could be the most important question you ever ask.
If you would like to follow Freya’s progress, you can like and follow her story on Facebook (www.facebook.com/freyastory), Twitter (@freya_story) and Instagram (@freyas_story).
For more information about Kawasaki Disease, please visit the NHS Choices website: www.nhs.uk/conditions/kawasaki-disease/pages/symptoms.aspx
If you know of anyone who is dealing with this disease and would like support, they can contact the UK Support Group through their website www.kssg.org.uk, or visit the KD Foundation (US) www.kdfoundation.org
To donate to Kawasaki Disease Research, please visit my fundraising page: www.virginmoneygiving.com/joannemcbride – all funds raised go directly to the COSMIC Kawasaki Disease Research Fund, registered charity number 1043697)
You can also visit the UK Foundation for Kawasaki Disease, Societi, to see the work they are doing to change the face of this disease: www.societi.org.uk