I had a conversation recently with a Paediatrician at our local hospital, who whilst discussing a current medical issue brought up that he was concerned that he had heard that I was angry at the hospital for failing to diagnose my daughter when she became sick in the early Summer of 2015. He mentioned that I had taken my folder with me to our last visit, and that the staff had commented that I was very angry at the time. I am not sure when he was referring to, as our recent visit when I took the file was actually a positive experience, and I was impressed by the communication between the three hospitals involved in Freya’s care. Yes, I took my folder with me, but I take it with me everywhere. That folder contains the letters from every clinic appointment Freya has had in the last 18 months – Rheumatology, Cardiology, Immunology. I take it everywhere with me in case a medical professional needed to see the history, and actually it was useful because the hospital hadn’t been copied in on the letters and took copies from me while we were there.
The fact that the doctor brought it up has been niggling me for a little while, so I thought I would try and capture why in this blog post and try to explain why a parent might act in a certain way when their child has been critically ill.
When Freya became sick in May 2015, she was immediately admitted to hospital and her condition very quickly deteriorated. Within hours of being admitted, she went into septic shock. When the first doctor who saw her decline started to take action, I felt like she was in good hands. They moved swiftly but calmly as they got her into the High Dependency Unit to administer fluid resuscitation. I remember the Consultant giving out instructions to the doctor and the nurses in the room, and they responded quickly, without any alarm. I could feel the tension in the room, and I watched through the bars at the end of the cot in quiet disbelief at what was happening in front of my eyes. But I watched in awe, not really knowing what they were doing, but feeling that it was right, whatever it was.
For 6 days, Freya was treated with a number of antibiotics. The main suspect was meningitis, but she was too sick and weak to have a lumbar puncture to diagnose it. During that first week, Freya displayed a fever that would not abate with the usual paracetamol and ibuprofen combination. She had sore, red, cracked lips – with hindsight that was a symptom of Kawasaki Disease, but it was attributed to dehydration at that time. She developed a rash all over her body, but in the first week that would disappear almost as quickly as it came. Her hands and feet looked puffy and swollen, another symptom of Kawasaki Disease, but with KD being so far from everyone’s minds with her being such a tiny baby, it was put down to swelling at the cannula sites. Numerous blood tests were taken in an attempt to identify whatever it was that was making Freya so sick, but nothing except the common cold virus (Rhinovirus) would show up in that first week. That wasn’t enough to make my little girl so very poorly. A lumbar puncture on day 6 would be inconclusive – elevated white blood cells, but no definitive sign of meningitis. Perhaps the cocktail of different antibiotics delivered intravenously in that week had dealt with it? So why wasn’t she getting any better?
Apart from one locum doctor who visited Freya in the HDU and suggested we stop all the medication rather than find a new cannula site (I know, right?!), every nurse and doctor that took care of Freya in our local hospital was fantastic. Not only did they take care of Freya, but they took time to take care of me too. They treated Freya as if she were one of their own children, and they showed an interest in me, listened to me and showed me nothing but respect. Some of the faces I can’t even remember, but there are a few that stand out and are etched in my memory, even if I can’t remember all their names. There were moments too, that I’ll not forget. The time that one of the senior nurses removed all of the equipment from the room so that we could allow my other children to visit without frightening them, that was a highlight.
I hope that the nursing staff know how much I appreciated how they took care of Freya. If I had any complaints at all they were tiny – it bothered me that the syringe packaging was sometimes left at the end of Freya’s cot. It didn’t cause anyone any harm, just paper and plastic, but it made me feel bad because her cot wasn’t a dustbin. The time the heart monitor failed in the night and they replaced it, but left the broken one at the foot of the cot; it was my baby’s bed, and although she took up very little room in it, I didn’t want those things left discarded like it didn’t matter. And that’s it really, my only criticism. And I know it might sound petty to share, but I hope that any nurses reading might think about how such a small oversight even when they’re obviously run off their feet, could make a new mother feel when she has too much time to think.
Even though the first hospital failed to reach a confirmed diagnosis, I do not feel anger towards them. It is easy for me to sit here now and say that Freya’s symptoms were clearly indicative of Kawasaki Disease, but hindsight is indeed a wonderful thing, and I don’t know that they could have done anything differently. In fact the Paediatrician said that he could understand my anger had Freya been diagnosed within hours of her transfer to the children’s hospital, but it took them a further week to diagnose her, so it was clearly not an easy undertaking. I said that they had looked for KD on the first day in the new hospital and he said that was right, because it was he who had suggested that was what they should look for. And now it makes sense why when they told us they were moving Freya, that they mentioned a heart scan. I thought it was just a routine thing, but clearly they had a suspicion that needed to be confirmed outside of their own local facilities. And that’s probably my one and only criticism of the doctors of our local hospital – I wish they had told me what they were considering. The problem is I never really asked them what they were looking for. I was naive. I thought they could just take her blood, plug the results in and hey presto! technology would have the answer. So I let them do their work, and didn’t ask a thing. The only question I wanted answering was one that I didn’t have the courage to ask. I gave that task to my husband; is she going to die?
Had the doctors mentioned Kawasaki Disease, would it have changed anything? Well, you know that is a question that has haunted me since Freya’s diagnosis. My instincts tell me that I would have read about the disease and asked more questions. I would have asked the most important question of all, “Why isn’t it Kawasaki Disease?” And when they told me she didn’t have some of the symptoms I would have cried, “Yes! Yes she does, see?!” They would have reached a diagnosis and given Freya the treatment on day 8, not day 13 when the damage had already been done. We would have left the hospital, emotionally bruised, but with a child that had been very ill but was now well. And we would have gone back to our normal lives…
The reality isn’t quite so straightforward. Would I really have come to the conclusion that the doctors couldn’t, simply by reading what I could find on Google? I have heard of cases that have been diagnosed entirely because of the parent’s knowledge. Would I have done that? Or would I have read about this obscure disease with it’s stupid motorbike name, laughed and moved on? I guess even if I had helped them to reach a conclusion, even if they had managed to give her the treatment within that magic 10-day window, Freya was in the category with the highest risk of heart damage – a neonate, female, displaying severe symptoms which we now believe was KDSS. When she finally got the treatment, she was resistant to both doses, and needed much more aggressive treatment to finally halt the path of the disease. Maybe she was biologically destined to be one of the unlucky ones?
That said, I wish the doctors had told me about Kawasaki Disease. It might not have come as so much of a shock when it was finally diagnosed, I might have been better prepared. The Children’s Hospital decided not to mention it too – had they told me that was what they were looking for when they did the first echocardiogram on day 9 which showed them a reasonably healthy heart (a small murmur) and led them to rule it out as a prime suspect, perhaps I would have reminded them of the symptoms they hadn’t seen for themselves the previous week when we were at the local hospital? And perhaps I would have had more respect for the doctors in the first week had I known that they suspected it first, but weren’t in a position to confirm it. That’s why they moved Freya. They wanted the Children’s Hospital to confirm or deny their hunch. The Children’s Hospital did an echo and the results lead them to turn their investigations elsewhere.
I felt angry about that for a long time, in fact I’m not sure if a part of me is still angry. I was initially angry at the local hospital for not getting it in that first week. Let’s face it, when we finally got the diagnosis and learned that Freya’s heart had sustained permanent damage, we were angry at the whole bloody world. Now I know that the local hospital had KD on their radar, I feel less angry. I only wished they’d told me. So how do I feel about the Children’s Hospital?
Much like my experience locally, I met some really fantastic nurses during our stay. In fact in all three hospitals (Freya would be moved to a Cardiac Unit in another hospital upon diagnosis) we met some of kindest, most caring people I have ever had the pleasure to meet. I guess that’s why they do the job that they do. It was a much busier hospital, so there was less time for chit-chat and the nurses seemed run off their feet moving from patient to patient to carry out observations and deliver medication. We were in a private room with Freya so were quite out of the way, which was isolating at times. There were a couple of issues with medication – an oversight that meant she nearly didn’t get the second half of the drug that was meant to be saving her life and was only pointed out by me when I awoke to see there was no IV going in; that was a big one. A lot of the time I felt like we were more of a number than we had felt at the previous hospital, but I’ll play Devil’s advocate that they were just so busy. The majority of the nursing staff were wonderful, especially with Freya, which is what matters. The nurses that came to talk to me in the night when I lay there crying on the foldaway bed, those that rocked Freya to sleep when I didn’t have the energy or the heart, they’re the ones that have stayed with me since our ordeal. The actions of the nurse who accompanied us on a transfer to the cardiac unit when the ambulance didn’t arrive to return us until well after her shift will never be forgotten. She saw it as her absolute duty to care for Freya and made arrangements to ensure that Freya’s medication and observations were carried out in that delay. She had finished her shift hours before and had her own child to get back to, but all she could think about was keeping Freya safe – it distressed and frustrated her that she was unable to care for her patient, and she did something about it.
The Doctor’s at the Children’s Hospital were always around, either popping in to check on Freya, discuss possibilities. They always seemed to be busy looking at the files, searching for answers and I don’t doubt that they lost many winks of sleep trying to work out why this beautiful little girl wasn’t getting any better. I didn’t know until way after her diagnosis that KD had been considered and ruled out. I wish they had told me at the start. But again, maybe it wouldn’t have changed anything. I would like to ask them now why they didn’t think it could be KD, and not just because the first echo was clear – you can’t diagnose KD from an echo. They believed that Freya’s only symptoms were the fever and a rash. I believe that her cracked, red lips and the swollen hands and feet were also symptoms – enough symptoms to confirm a diagnosis. Had they understood more about the disease, might they have also known that whilst KD is very uncommon in young babies, young babies are more likely to suffer from Kawasaki Disease Shock Syndrome? Had they considered that, might they have realised that whilst thrombocytopenia (low platelet count) is not a common symptom in KD (in fact is is usually very high), it is a characteristic of KDSS? Might they have looked back over the previous week and seen that everything about her was synonymous with a KDSS diagnosis?
Perhaps my expectations of them are too high – they cannot possibly know every single childhood ailment in detail. There are over 7000 rare diseases in this world and KD is just one of them. Some doctors won’t ever have seen a case in their career. They spend most of their career dealing with ‘horses’ and are not on the look out for the odd zebra that might turn up. Is it only hindsight that allows me to see now what they couldn’t then? I do know that they have learned from Freya, that she has taught them a lot about the disease. I do know that they are less likely to make the same ‘mistakes’ again. Again, I just wish they had told me what they were looking for, and why it couldn’t be Kawasaki Disease. Because when they ruled it out, for whatever reason, no matter how unusual Freya was, they got it wrong. They got it wrong, and I will never know if that decision was responsible for the damage that KD did to her little heart. I cannot change the past, though, and so I have to be thankful for the doctor who came to see her when the rash appeared on day 12 and suggested she be sent for another echo. That echo showed the damage that confirmed it had to be Kawasaki Disease. That doctor may just be responsible for saving Freya’s life.
So let me get back to the point of me writing this blog. I guess I wanted people to understand that I may well have been angry at times, but that my anger does not mean that I do not appreciate everything that all those medical professionals did and have continued to do in taking care of my daughter. At the time I wanted someone to blame for breaking Freya’s heart. And mine. I was angry at life. I was angry at a God that I’m not even sure I believe in. I know now that no amount of anger or blame was going to change anything, but it is one of the stages of grief. I could not believe that I had taken my perfectly healthy child to hospital with what looked like a virus, and took her home with a heart condition. That had to be someone’s fault, didn’t it? Who knows. Nothing is going to change.
Do I think that a diagnosis might have been reached sooner? Yes, I do. Do I wish that they had asked me what I thought, told me about Kawasaki Disease and asked me if I could think of anything that they might have missed? Absolutely. Do I consider myself lucky that Freya fell ill on a Sunday at 7 weeks old and was therefore too much of a risk to leave to chance? That I didn’t have to face countless appointments with GP’s who might have sent us home with the usual ‘virus’ diagnosis? Yes, yes, and yes – when Freya went into shock, she was absolutely in the right place; what if that had happened at home? Do I thank my lucky stars that regardless of all that anger and confusion, regardless of whether it was ‘too late’ or not, that the right doctor walked in at the right moment on the right day and helped them to reach the right decision? Yes, a million times yes.
I have found peace with that part of our journey now. I am just grateful that Freya was strong enough to fight, and that she is here, bold and bright and beautiful. I used to refer to her as ‘damaged’, ‘broken’. I don’t see her that way anymore. The hidden faults within her heart are no longer what defines her for me. And whilst I can’t change the path that we have been down, I can make a difference to the future of Kawasaki Disease by sharing our experience and never giving up when it comes to raising awareness.
I hope you will continue to support us.
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Then and now…