freyasstory

I have this noisy baby…

Posted on by Bluemama

She likes to scream!  And I mean, SCREAM!  A high-pitched, piercing scream that drives right through to your bones.  It makes me wince, and is a source of anxiety for me.  It has me a bit stumped if I’m honest.  Up to now, I’ve been able to communicate verbally and non-verbally with my 11-month old (she knows sign language for ‘milk’, and has made up her own signs for most other things).  When she was a tiny baby, I even worked out the language of her cries, and I could tell the difference between the sound she made when she cried for food to any other cry she made.  But I haven’t quite managed to tune into the scream, perhaps because I am trying too hard to tune out..?

I might be getting close though.  It is somewhere in between frustration and attention-seeking I think.  It happens mostly when she is restricted; car seat, pram, highchair.  Add any of those situations to occasions when she doesn’t have my full, undivided attention, and you can multiply the decibels tenfold.  So, you can imagine how I feel if I’ve driven into town (car seat), walked to a coffee shop (pram) and sat down (highchair) for coffee with a friend (divided attention)!  I am living off my nerves!  That said, I keep telling myself that this is temporary.  She will soon learn to communicate more effectively, and the need to scream will lessen.  And as she starts to settle down in this new and amazing world she has discovered at speed as she commando-crawls across my wooden floors, I will be able to allow her more freedom.  Soon she might be allowed to sit on a normal chair, stand, walk a little, so as not to feel imprisoned by a 3-point harness.  Until then, I have to accept it, and perhaps try and work out how to help her break the habit. That’s the hard part.

Although, saying that, it’s not the hardest part.  Oh no, the hardest part is trying to deal with the noise that my child has decided best fits to articulate her thoughts when surrounded by selfish, insensitive, intolerant human beings who either never had children of their own, had perfect children, or who can’t remember what having small children is like.  Yes, that is the hardest part.

I’d like to address the above described human beings, if I may be so bold.  Perhaps you will need to share this blog post on social media to make sure it reaches the right audience; if you’re reading my blog I am most sure you would not be one of those people.  So here goes…

Dear Intolerant,

I know my daughter’s screaming is loud, and intrusive, and downright irritating.  I feel it too.  Except I feel it in a way that you will never come close to, because she is mine.  I carried her in my body for 9 months, and I went through 3-days of induced labour hell to bring her into this world.  When I beheld that little face staring up at me from the hospital bed (yes, I was on all fours like some kind of wild beast!), I had no idea that she would develop this rather annoying habit.  I could do without it too.  Don’t you think I would prefer to have one of those babies who just sits in their pram without making a sound so that I can engage in good old fashioned chatter with one of my girlfriends over a caramel latte?  Of course I do! Don’t you think that I don’t wish I wasn’t such a prig about dummies (not that my babies have ever been able to take to one when I’ve tried)?    

Do you think I can’t hear it? That every screech doesn’t churn me up so much that inside I too am screaming? Do you know the embarrassment I feel every time that sound leaves her tiny lips, or how I squirm in my seat at the thought that she is spoiling the experience for everyone else?  Well, trust me, I hear it. And I feel it.  And it makes me want to run.  But let me tell you this; seeing the looks on your faces, watching you put your fingers to your ears, seeing your shoulders scrunch up with tension with each shrill squeak, feeling your head snap in our direction and hearing you mutter “Oh for goodness sake!”, or “What a naughty thing!” to your friends not only makes me want to run, but makes me want to run and hide and never come out again.  

When you look at me with irritation, and not compassion.  When you say cruel things about my baby, without understanding.  Those things hurt me to my core.  I can’t expect you to love my little girl like I do, but know how much it hurts to think that others are thinking ill of her because she has learned to vocalise her frustration.  She is an 11-month old baby. She loves to crawl.  She loves to sit surrounded by bright and noisy plastic things that make her smile. She loves the challenge of that piece of furniture that looms like Everest, yet she can conquer it in one pull on those little arms of hers; the pride in her face when she makes it to the summit is something us grown ups have long since forgotten how to show.  She doesn’t particularly like being cooped up in a pram, strapped in because the floor isn’t safe or clean enough for her to roam.  I hear your unuttered thoughts, “Take her to a baby group then, and not our [insert favourite venue]” Oh, how I would love the normalcy of a playgroup right now. Where I could sip a cup of tea with likeminded mums whilst our children play happily in the soft play area.  Except I can’t.  I can’t because my child takes a drug that puts her at risk of serious illness (perhaps even death) if she comes into contact with certain childhood illnesses, so until her immune system is able to accept the relevant vaccines, a play area is the last place you will find us.  

“So, stay at home then, if that’s where she is happy.” Yes! Yes! That’s the answer. You’re quite right of course – she is happiest when at home with her toys and her freedom.  But what about me?  What about my needs?  Most days I do exactly that; stay home and entertain my little girl, or stay close by while she entertains herself.  It’s lonely.  Days go by when the only adult interaction I have had has been via Facebook.  So when that invite for a coffee comes in, with the opportunity to get out in the fresh air and meet another human being and talk, of course I am going to take it.  It is th antidote to my depression.

“Plan your time better! Go out when she naps!” Oh yes, another brilliant suggestion.  Except that I have this clockwork baby, that since spending 6 weeks laid on her back in a hospital cot has slept from 6pm to 8am without a murmur.  The trade off being that she is awake and switched on for pretty much all of the daytime hours.  Once there was a chance that she wouldn’t be here at all, so I’m happy to take the trade.

You see, this baby who looks like butter wouldn’t melt and screams like a fiend, has been through more in her little life than I have had to contend with in my 41 years.  And she has achieved more than most of us will in a lifetime.  She is an inspiration, and she is my little miracle.  And me?  Well, I suffer with anxiety on account of having been through the trauma of seeing my 7-week old baby get sicker and sicker until eventually a broken heart confirmed she had been struck by a rare disease with a penchant for the coronaries.  I haven’t dealt with that yet; these things take time.  But I am dealing with it, and for all you know that coffee I am drinking is the first I’ve had all day because that morning I went to my PTSD counselling straight after dropping the older kids at school.  

I remember the silence of the first few weeks of my daughter’s illness.  It’s a silence that will haunt me forever.  When I feel irritation at that scream, I feel ashamed for disliking a single bit of my little girl.  Sadly, the anxiety is making it difficult for me to see through the scream to the child, to understand what she needs.  But I cannot hide us away from the world.  She is bright as a button.  She has got things worked out that a child her age shouldn’t be able to figure just yet! So of course she is going to scream when I try to stifle her need to move, explore, discover and learn.  

I am not asking you not to feel annoyed; I have no control over that.  I’m just asking that you search deep inside for some compassion.  You have no idea what journey a person has been on.  You have no idea what a person is struggling with right now.  I have no idea what you might be struggling with right now either, which is why I will always look at you with kindness and a smile.  If you knew that I go home and cry after an encounter with someone like you, would you act differently next time…?

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75,000 Reasons to be Thankful…

Posted on by Bluemama

So Peanut, where do I start?  I guess a good place to start would be to thank you.  Thank you for coming into the world, despite all my efforts to ruin that.  I wasn’t sure that you were welcome in my life when I found out that you were coming along.  Some people might say I ought not to share that, but do you know what? I’m not afraid of my honesty, because I know that you will never, ever feel that you were not wanted.  So I wasn’t sure I was going to love you when you were growing inside me, not in those early months.  But towards the end, our bond began to grow, and when you arrived into the world, a tiny, purple, screeching thing, I knew that the past didn’t matter.  What mattered was that you were here, you were alive (yes, I was afraid of that), and that there was no question in my mind that I loved you at that moment, and that I would continue to love you for the rest of my life.

You were so precious, and I held you so tight I was afraid I would crush you.  But I had been on such a journey to get to that point with you that I had to feel you in my arms, really feel you.  Years ago, when your older sister and brother were born, babies seemed to be whisked off, the moment they arrived, for the all important weighing and measuring.  It seems the health service have learned a thing or two about bonding since then.  I remember saying over and over to the midwife, to your Auntie and your Daddy that were all there with me to share the moment when you burst into that delivery room, “Am I hurting her?”, “Am I holding her too tight?”  And they told me to relax, and I held you for the longest time, drinking every bit of you in.  I felt like I had been truly blessed.  Not in the glib clichéd sense, but actually blessed with a gift.  You were a sign.  A sign that proved to me that I was indeed a lucky person, and all the insecurities, fears and negativity I had held onto for so long were allowed to be set free.

In the early weeks, I took heed of all the advice I had been given and ignored with your siblings.  We didn’t go out of the house for weeks.  We spent our days cuddled up in the cosy corner of the sofa and got to know each other.  When you slept, so did I; the housework could wait.  And I didn’t feel any need to rush out to meet people or go places, because I wasn’t ready to share you with the world yet.  You were all mine, and I all yours.  There would be time for all that fun stuff later.  Had I known what would happen 7 weeks later, might I have done things differently?  No, I don’t think I would have.  In fact I am glad I made the choices that I did, because at least I got to have the perfect you all to myself for 7 blissful weeks.  Before…well you already know what happened next.

I am not going to dwell on the following weeks, on your illness, on your diagnosis or the effects that Kawasaki Disease have had on you.  By the time you read this we will have covered all that.  No, this letter is about thanks, so lets get back to the point shall we.

You truly are a remarkable little girl, Freya.  You have endured so much in your little life, and yet you have managed with a grace that shouldn’t even be possible at your age.  You have more courage than I have seen in people more than 20 years your senior.  Your heart, tiny by comparison, has the ability to love with more fervour than any adult I have met in my 41 years on this Earth.  You touched my heart in some magical way the moment you were born, and you have continued to touch the hearts of everyone who has encountered you since.  You have something special within your soul, that shines out like a beacon through those eyes.  Eyes that have both the power to haunt and to heal me.

You have taken everything your short life has thrown at you in your stride, before you are even able to walk a step! Even when you were critically ill and your eyes pleaded with me to help you, your little mouth worked so hard to form a smile.  And later, as you started to get stronger, you smiled for every nurse and every doctor that crossed your path.  And there were a lot!  You even managed to bowl the phlebotomists over when they came to take your blood.  You would cry for a moment, but once they had taken their fill, that smile would spread across your face like a sunbeam and I would see that you had made someone’s day.  Again.

Thank you for inspiring me to write.  Well, it was your Auntie who gave me the journal and the pen, but you were my muse.  I remember opening that book, and wondering where to start, and then I looked over at you in your cot and I knew you were scared and I had to tell you what was going on.  And so the letters began.  I didn’t give it too much thought after that; the letters just came, at the end of every day when you were sleeping.  I would write in the moonlit room, laid on the parent bed by the side of your cot.  Sometimes I would think about how you would learn all about those days, because I knew you wouldn’t remember them.  Often, it was a chance for me to keep a note of the facts as your story unfolded.  Sometimes, on particularly bad days sweetheart, I would wonder if I would ever get to share your story with you, and I wondered if I knew deep down that I could really be writing for myself.  But let’s not dwell on that, eh?

I knew your story was one that I needed to share.  It came from an intense need to make sure that you had not suffered in vain.  To walk away and do nothing would have made me feel like it was unimportant, and it felt too important for me to do that.  In every moment that I wrote through tears in my journal, I felt that there was another parent like me in a hospital room somewhere with their child; sad, scared and alone.  I felt alone.  I scoured the internet,  I contacted Doctors near and far, and I joined social media support groups searching for answers.  The thing is, you can find the basic answers for the typical cases, but your case was an atypical one in many ways.  Any answers I did get were like gold, and whilst I knew that the information I gathered in relation to your case would not be appropriate to generalise, I knew that I couldn’t hold onto them.

And so Freya’s Story began.  I resurrected this blog, and created your tag.  And then I created a Facebook page that would help me to broaden the audience for awareness.  I had a lot of catching up to do – I had written 40,000 words in that journal if I remember correctly! So I began the task of transferring those journal entries onto my blog, whilst updating on your current situation.  There are many other social media pages who are dedicated to raising awareness and keeping people like me informed on latest news and developments in the world of Kawasaki’s.  The various support group pages were great, but sometimes the updates about children who were continuing to experience health issues years after diagnosis would push me into a very dark place.  Sadly, that is the reality of the disease, I know that.  But I wanted to use your page to show people that there is #lifeafterkawasakis.  Of course the disease continues to blight our life.  You have continued complications with your heart that are still unknown.  In a couple of month’s time you will go into hospital for an invasive procedure to try and get some idea of what is going on.  So far, you look like a miracle kid.  But we need to look deeper to be sure.

Freya’s Story is about more than the disease though.  It is about a special little girl, who has the ability to inspire a mum to write; I always knew I had words in me, I was just lacking the inspiration.  It’s about a pair of eyes that have the power to lock with the reader’s through a screen and implore them to read your story.  It’s about flying in the face of adversity, seizing opportunities, loving life and having hope.  It’s a celebration of a little girl who will not allow some nasty bastard illness (sorry for the language but I get a bit angry at KD sometimes) to stand in her way.  You are not the Kawasaki Kid.  You are my marvel, and you surprise me every day.  I hope as you read this, all grown and proud of whatever you have achieved in your life, that you still cannot see the scars that KD left you with.  It is an invisible illness that shows itself for a while, then skulks back off into the shadows where it belongs.

I knew I had done the right thing as soon as the messages started coming in.  Ok, so Freya’s Story hasn’t exactly gone viral – let’s face it, Kawasaki Disease doesn’t have the same amount of clout as Meningitis, say, but it needs putting on the map, and you and I will help to put it there.  And anyway, if even just one parent feels less alone, or one child receives a swift diagnosis or the right treatment after reading our blog, then we achieved what we set out to.  We’ve had parents sending messages of hope, parents asking questions about medication, treatment, immunisations, all kinds of stuff.  I’ve had to be careful with my responses; I don’t have a medical degree (although I do sometimes feel like I have one in KD), so I have mainly signposted parents to useful social media pages, internet links, research papers, support groups and the like.  I have given words of comfort when they’ve been asked of me.  I’ve kept people up to date with how you are doing when they’ve contacted me to ask how you are.   We’ve been credited with helping parents get the treatment that they needed for their child, and helping some people through some lonely times.  I am sure there have been some doctors across the country muttering “Who is this Freya’s mother?!” But I have never claimed to know it all. I only know about you really.  But at least I have been able to provide information that has helped to inform discussion and provide a line of questioning that might previously have been more difficult for a parent to navigate.  Thank you for inspiring me to do that.

You might not thank me for it, but I am sacrificing your 1st Birthday to raise funds for Kawasaki Disease research.  Ever since I made contact with the Professor heading the research after we sent off our swabs for genetic testing, I knew I had to do something.  I had asked the Professor to show me a tangible offering for parents like me to donate to.  Something that would show us how we could contribute to the amazing opportunity that had been granted to Professor Jane Burns in the States.  He cemented the offering in a 2-page document with a link to the COSMIC Kawasaki Disease Research Fund campaign on the Virgin Money Giving site, and I shared it with the Kawasaki community back in November last year.  Once I had a willing recipient, I could concentrate on bringing in some funds – no matter how small our contribution might be, the Professor had assured me it would be worthwhile and gratefully received.  And so the idea of turning your birthday party into a fundraiser was born.  I’ll tell you another time about those details, but for now, I want to thank you for forgiving me for giving up your birthday for Kawasaki Disease.  I have promised that I will not steal any more birthdays from you.

There are so many people to thank for their contribution to your birthday party, and it’s not for another 6 weeks! I will make sure I cover that when I blog about your event.  From local businesses donating prizes to entertainers offering free services, we’ve had a huge amount of support.  The local press have followed your story since we first approached them to help us raise awareness after you came home.  We’ve had cupcakes sold in your honour, and cash donations have started to hit the Virgin Money page.

And then there was this one thing, that started with a Tweet.  

Twitter and I are kind of new friends.  I set up your Twitter account not really knowing what I was going to do with it.  I still don’t really, but I dabble here and there and started to share your blogs when I’d worked out how to!  I mainly use it to hound celebrities in an attempt to increase the reach of your story and shine the spotlight on Kawasaki Disease.  I have had some successes; some of the key KD and Rare Disease organisations follow Freya’s Story.  We’ve had retweets from some celebrity Doctors, like Dr Miriam Stoppard and Dr David Bull.  One of the stars of TOWIE retweeted once, and we’ve had a couple from actresses and directors.  We set out on a bit of a challenge with a Kawadad from the other end of the country, (you know who you are!) but he has had more success than we have, lol!  I have a lot to learn about Twitter it would seem.

But, somewhere, on one sleepless night during their own Kawasaki ordeal, it would seem that the right person stumbled across your story.  They saw that we were raising money for the Kawasaki Research Collaboration between Imperial College London and Rady Children’s Hospital in San Diego.  And that person did a remarkable thing;

“…managed to get…some funding for research. 75 thousand pounds…”

Even though I’ve had that information for a couple of days now, I still struggle to let that sink in.  I think my response was something like “Are you serious? How is that even possible?!” which was met with a reply about the world not being all bad.

I received an e-mail from the charity too, but I still didn’t quite believe it Peanut.  How could we have inspired such a huge donation?   But it is true.  And if the donation can be counted towards the collaboration pot, it will be doubled. Meaning that single investment in research is worth £150,000!!

“…you may want to thank someone who raised awareness about the KD research thru her twitter activity: I found you guys late at night reading the posts from a @freya_story” 

Thank you for giving me a story to tell.  Whilst I would have given anything to have prevented you from going through this, I can take comfort in the fact that because this happened to you, great things might happen.  No amount of raising of awareness or funds will change what happened to our family 8 months ago.  The emotional scars will take a long time, perhaps forever, to heal.  What I hope it will do, what every parent who has experienced this with their child hopes, is that the research being undertaken now will change the future of Kawasaki Disease and the lives that it lays claim to.

I’m going to leave you with these lovely words, received from Ilsen Cafer (Fundraising Co-ordinator for COSMIC – Children of St Mary’s Intensive Care);

“…You deserve to be very, very proud.  I can’t imagine how tough a time it must have been for you and your family when Freya was diagnosed, but your special little girl, her story and your courage have helped lots of parents, as well as inspired a donation which will make a difference to the lives of Kawasaki patients around the world.  Never underestimate the impact of your story, you’re doing a fantastic job!” 

“…Please tell Freya in her letter that she is our little COSMIC star and that she should be very proud that aged only 1 she has inspired so much more than most people ever do!”

It seems that I have so many people to thank, and so much to be thankful for, despite this terrible experience that we have all been through at the hands of this disease.  Most of all though, I have to thank you for being you.  You have got us through this.  You.

And then there’s one person whom I would like to be able to thank 75,000 times, and that is one very cool Italian dad who lives in Hong Kong.  Thank you from the bottom of our hearts.

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The Thing with Rare Diseases…

Posted on by Bluemama

…is that they happen to someone else.  At least that’s what I thought.  What are the odds of my little family being struck by some random illness that nobody has heard of? Well, I’ll tell you. 8:100,000. Those are the odds. 8 in every 100,000 children in the UK are diagnosed with this condition every year. The illness is called Kawasaki Disease. My daughter is Freya.

Today is National Rare Disease Day, so I thought I would focus on that for the subject of my latest blog post. I want to tell you what it means to have a rare disease enter your world.

The thing with a Rare Disease is…

They like playing hard to get.  Some of them are so well-disguised that they masquerade as a number of more common illnesses.  Take Kawasaki Disease.  You take your child to your GP with the symptoms of KD and you’ll most likely be sent home with the word ‘virus’ ringing in your ears. You’ll be told to give four-hourly paracetamol, interspersed with the same regular dose of ibuprofen; antipyretics to keep that troublesome fever down.  Days will pass, but you’ll believe the drugs will eventually do their work once the virus has run its course.  How many days do you let it run its course for? 3 days? Maybe more?  Did you know that there’s a UK medical protocol for dealing witha child  who has presented with a fever for more than 5 days? You’ll tell yourself that the rash that appeared after a couple of days is simply viral.  The eyes look bloodshot; wow this cold really has taken it’s toll on them. And your child is irritable and lethargic all at once, but aren’t all kids when they are poorly? You might even return to the GP, get a course of antibiotics, keep on with those painkillers to take the heat off the discomfort, literally.  Your GP might diagnose Scarlet Fever, or perhaps hand, foot and mouth.  Chances are, your child will not receive a diagnosis of KD until it’s too late. Until the vasculitis that has inflamed every blood vessel in your child’s body has managed to reach their little heart.  Coronary artery dilation and/or coronary artery aneurysms. There’s really only one thing that can cause those in a kid. Kawasaki Disease.

That’s not quite how it happened with us. We were one of the ‘lucky’ ones in that our daughter’s age and the day of the week played a huge part in getting her in the right place at the right time.  At 7 weeks old she was too young for Calpol, and on a Sunday there’s no GP to get it wrong. That said, Kawasaki Disease disguised itself as bacterial meningitis for the first week of Freya’s illness, and then decided to affect her body atypically, making the job of reaching a diagnosis all the more challenging.

It’s quite often a rebel without a cause. Where KD is concerned the cause is yet to be discovered. Without a cause, and with so many children presenting with the illness in a very independent way – not all children get the same symptoms at the same time – there’s no diagnostic test.  The treatment for the disease is effective, but we’re not really sure why.  Knowing the cause of this disease would open the door to swifter diagnosis and better treatment.  With KD it’s a bit of a race against time.  There’s a magical 10-day window within which to treat in order to improve the chances of the heart getting off a bit more lightly. Outside of that, the disease can get too much of a head start. Freya’s heart went from normal to screwed within 5 days.  The disease hid itself well for nearly 2 weeks, until on day 13 (unlucky for some) it went “ta-daa” on an echocardiogram. Nice move KD.

Rare means your doctor probably hasn’t seen it. They may not have even heard of it. So they’re most definitely not looking for it. I’ve spoken with GP’s who have not yet seen a case in their 20 year career. Naturally, doctors will work through the most likely culprits first. They’re not on high alert for some disease that quite frankly sounds ridiculous with its made-up name that conjures images of motorbikes (it’s not actually made up, it is named after Dr Tomasaku Kawasaki, who discovered the disease a few decades ago). But it sounds it. Some rare disorders don’t even have a name. In order to reach a diagnosis for a rare disorder, the medical professionals will have to go through a process of elimination with the more common illnesses that bear the same or similar symptoms. They will test for countless infectious diseases but draw a blank. Do you know, I actually thought they would take my daughter’s blood, put it into a computer and out would come the answer. I had no idea before this, that there were things you couldn’t test for. Silly really. Sometimes the Drs will try certain drugs, only to be baffled by the body’s lack of responsiveness. Our daughter had 4 different IV antibiotics entering her tiny little body, and yet she became more and more sick as the days went on. I couldn’t understand why the Drs weren’t making her better. But our child was diagnosed on day 13 and was treated accordingly. There are people out there with illnesses yet to be named, perhaps even discovered. Those people could wait years for a diagnosis. Two weeks felt like torture. I cannot imagine how that would have felt multiplied into months, let alone years.

If you’ve not heard of it, it can’t be that bad. Right? That’s what I thought. The day before Freya was diagnosed with KD she had a bone marrow aspirate taken in theatre under general anaesthetic. The moment they mentioned bone marrow, I knew they were looking for the ‘C’ word. What they found instead was a whole lot of healthy cells, and she was cleared of that. Relief.  But then the next morning you’re told that they’ve found it! You can’t quite believe it because the last 2 weeks have seemed like an eternity and now the wait is over! They tell you your child has Kawasaki Disease and you actually feel the tension in your shoulders disappear. Aren’t we lucky it’s only Kawasaki Disease. Never heard of that one so it can’t be a bad one. No, the bad stuff everyone has heard of. Leukaemia, meningitis…they’re the baddies aren’t they. No this Kawasaki Disease had to be ok. If it was that bad I’d have heard about it. Wouldn’t I? Except that it is that bad, but you don’t hear about it because your local children’s hospital has probably only seen 4 cases in the last year, and they all looked different.

Rare means there are so many unknowns.  If an illness is rare, it might not have been around for very long.  There might not be many known patients with the disease. Which makes treatment more tricky.  There is no standard UK protocol for the diagnosis and treatment of Kawasaki Disease.  That means you really are at the mercy of the doctors that you are dealing with. Again, I believe we were ‘lucky’.  From the moment a diagnosis was reached they worked tirelessly to aggressively handle this disease. NHS England gave permission for certain drugs to be used on Freya that had not been agreed for use in an infant.  They referred to her case as “a very severe presentation of Kawasaki Disease” remarking that the illness is particularly troublesome in very young babies.

Unknowns are hard to deal with, especially if you’re a bit of a control freak like me. I like to have all my ducks in a row. There’s no chance of that with this. And just as you begin to think things are looking up, KD throws you another curveball.   Long term prognosis is sketchy. But in all fairness, what long term studies have been carried out suggest that Freya might just come through this ok.

Rare is lonely. When you or your child is diagnosed with something pretty obscure you literally feel like the only person in the universe that is going through what you are. Because nobody had heard of KD it felt (still does sometimes) like they didn’t really appreciate the seriousness of it.  Even now, with everything I have shared through Freya’s Story, people ask “So, is she ok now then?”  Never quite quite how to answer that one.  Usually with a “Yes she’s doing really well..” When actually what I want to say is “Yeah, unless you count the fact that’s she now has a heart condition and we don’t know what’s around the corner…”  And it’s not just the general public either. You feel very alone when you’re dealing with Drs that can’t answer your questions because they just don’t know.

That’s where support groups come in. Through the various groups on Facebook I have connected with other parents like me who too have felt scared and lonely. Whilst all of our experiences might have differed slightly, one thing that unites us all is an understanding of the fear when you watch your child begin to slip away from you, and the sheer devastation of hearing that your child has been damaged by this disease. And let’s face it,  the heart is a pretty important organ.

Rare changes you. Since Freya’s illness, I have changed.  I suffer with anxiety, and was recently diagnosed with PTSD. I see a counsellor once every week for cognitive behavioural therapy to help me deal with the trauma of the last year. I find it hard to be around people who don’t understand, or don’t make the effort to. I probably find more comfort in chatting to a fellow ‘Kawamum’ online than I would get from a closest friend.  This experience has left me questioning everything I believed about my role in protecting my child.  I grieve for the healthy baby I gave birth to; the one with the perfect heart. And I am very much aware of our own mortality now. I am scared of dying, and I am scared of loss.

There is an upside. I have met some amazing and lovely people along the way. This experience has taught me that life really is precious and that you should embrace opportunities as they arise. I don’t have the strength for disappointment these days, so I have probably reduced my circle for now, a kind of damage limitation.  I take a lot of joy in meeting people who have been touched by Freya’s Story.   I get messages from strangers that remember when she has a medical appointment, or ask me how I got on at my counselling session. The well wishes and words of encouragement from those people has lifted me from the darkest of moods.

The support from friends and local businesses with prizes for a raffle that we will be drawing on Freya’s 1st birthday has been overwhelming. People are so generous, and I am very grateful to them. I may never come to terms with the fact that this happened to us, to our baby girl. But knowing that Freya has touched the hearts of so many has made this journey a little easier to travel.

So on this Rare Disease Day 2016, I would like to thank everyone out there who is helping to shine a light on Freya by sharing her story and supporting us with our ambition to raise awareness and much needed funding for research. Thank you ☺️

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You can follow Freya’s Story with updates on her progress and other KD news at http://www.facebook.com/freyasstory

Because life, at best, is bitter-sweet

Posted on by Bluemama

It has been a little over 8 months since Freya was diagnosed with Kawasaki Disease following her hospital admittance on the 31st May 2015.  She was 7-weeks old.  Infants under 1 year are hit particularly hard by the illness, and are at greater risk of heart involvement.  The magic window for treatment that has the highest odds for reducing the risk of coronary artery dilation and/or aneurysms is considered to be 10 days.  Freya was diagnosed on day 13 when an echocardiogram showed significant dilation to her tiny coronary arteries, and she was transferred by ambulance to a specialist paediatric cardiac high dependency unit (HDU) in another hospital.

Since her diagnosis, Freya has had numerous ECG and echocardiograms performed at follow up appointments. Some of those appointments have shown no change, but two of those appointments showed some remarkable improvement that managed to incite a “Wow!” from her Cardiologist.  In September we were advised that her right coronary artery (RCA) had improved to within normal parameters (around 2mm), leaving just the left coronary artery (LCA) and left anterior descending (LAD) with reduced, but significant, dilation.  The aortic valve had ceased leaking some time before.

I remember at the time asking the cardiologist (who wasn’t our usual one due to a mix up in dates), whether the swift improvement was cause for concern in relation to longer-term issues, such as stenosis (narrowing of the coronary arteries), but he had said that there was no evidence to suggest that was the case.  And so I made my peace (kind of) with the condition of Freya’s heart, and accepted that things were improving and that her prognosis looked good, regardless of how scary it all still was.

Her last appointment in our local hospital was a disaster.  We were kept waiting for nearly 3 hours with no explanation before finally being seen by a consultant who felt under-qualified to deal with Freya’s case.  Nevertheless, she performed an echo, the results of which suggested there had been no change since the previous echo.  No change is good news in these cases – at least things hadn’t got any worse.  Had she told me there was some improvement, however, I would not have believed it, and immediately contacted the original hospital to request that we be moved back under the previous cardiologist.  Sometimes convenience isn’t the best option; I would travel 10 times the distance for Freya to be treated by someone that I trust and respect.

Today found us back in Leeds, back with the Cardiologist that first treated Freya, and has taken pretty good care of her ever since.  She is the same Cardiologist who took me in a room and explained the risks of Freya’s condition back in June; the same Cardiologist who I went to battle with over not giving Freya Warfarin despite the treatment protocols suggesting that was what she should have.  She made a strong case, one strong enough for me to put my trust in her.  It was the hardest decision I have ever had to make, but it appears to have been the right one.  Freya has been thriving since her diagnosis, she appears to show no adverse affects, no night terrors, no evidence of joint pain, none of the things I see mentioned in many social media forums.

So come on then, tell us the news….

Ok, so today Freya had an ECG and an echo.  As usual, the ECG showed that heart function is all good.  During the echo, the Doctor remarked that Freya’s heart function was “Beautiful!”  She measured the arteries at their widest points and remarked that she could see two aneurysms on the RCA.  I was surprised by this, as previously we had been advised that the RCA had normalised, and I wondered aloud whether as the artery had remodeled, could any ‘true’ aneurysms now be more noticeable (Freya’s arteries were significantly dilated all the way along, without the typical balloon shape aneurysm you expect to see when you use the ‘a’ word).  The doctor went in to look again, and could not get the same image, or any image to show the aneurysms she believed she had seen.  Perhaps it was a bad angle?  Maybe Freya wriggled too much for her to get the same view?  I’m not sure, but the Doctor concluded that all three coronary arteries (the RCA, LCA and LAD) appeared to have remodeled to within normal parameters!  Wow! That’s cause for celebration!

During the acute stage of the illness, we were advised not to expect to see any improvement at all until Freya was at least one year old.  To have seen her arteries reduce to near-normal levels in just 8 months is remarkable!  She truly is a miracle.  Or maybe this is just the case with tiny babies?  Sure, they are hit hard by the illness and more of their little hearts suffer, but their organs are still developing and perhaps they just compensate for the damage and work harder to repair it?  Who knows? Research is still very much in it’s infancy (thus my passion for fundraising for this cause).

We sat down, and I asked my husband to dress Freya whilst I asked the questions I had prepared before I went in.  These are the questions I wanted to get answers for:-

  • What do you consider to be the current risks?
  • What are the exploratory steps we can expect for Freya?
  • When would those next steps take place, i.e. at what age?
  • What is the view on Reye’s Syndrome, and what are the suggestions in relation to aspirin during the Chicken Pox vaccination period?

Before I had the chance to ask my questions, the Doctor started to answer the first.  She exclaimed that the improvement was indeed remarkable, but that the speed at which Freya’s arteries had remodeled was unexpected and gave her cause for concern.  She knew that I understand that an echo can only see approximately 3mm of the length of the coronaries, and explained that she was concerned about what was happening beyond what she could see.  She aired the same concern that I had raised back in the Summer when I told another Cardiologist that I was worried that the swift remodeling could result in higher risk of stenosis.  Sometimes I wonder if I am bloody psychic!  She said that she would be happier if she could take a closer look at Freya’s heart to satisfy herself that the whole picture was as good as what she could see.

So, what’s the good news?

Ok, so the good news is that Freya’s heart has shown remarkable improvement, basically remodeling itself to where it should be, or would have been under normal circumstances.  If the next steps prove that the bigger picture is the same, the Cardiologist feels she would be comfortable to stop the aspirin.  That means that Freya would continue to be monitored into adulthood, that further tests (exercise stress testing, MRI, etc) would continue to take place during that period of monitoring, but that she would be treatment free.  Fantastic! That would be almost ‘normal’.  Wouldn’t it?  Wouldn’t that just be normal?

Yeah, so that’s sweet isn’t it?  What’s there to feel bitter about?

Alright, alright, I know what you are thinking!  For months I’ve suffered mentally over the prognosis for Freya and the fear that comes with having a child with a heart condition.  I should be unconditionally happy, right?  It’s just that the way they want to find out what is going on with the bigger picture is to carry out an angiogram.

“An angiogram is a test that’s used to find out more about your heart. It can help to show if blood vessels called coronary arteries, which supply blood to your heart, are narrowed or blocked. If they are, it can show where and how severely they are affected. It can also see how well your heart is pumping blood.”  http://www.bupa.co.uk/health-information/directory/a/angiogram

Whilst a CT or MRI are preferable in a child as young as Freya because they are non-invasive procedures, an angiogram is considered (by our Doctor) superior to a cardiac CT or MRI scan in that it provides a clearer image where the arteries concerned are very small, like in a young child.  The procedure involves inserting a catheter (a thin tube) into an artery in the groin or wrist and guiding the catheter to the coronary arteries where dye is inserted and a number of x-ray images are then taken.  Freya would need to be sedated, likely to go under general anaesthetic.  Not only is it invasive, but it is a procedure where the risks are greater the younger the child.

It is considered pretty standard practice to carry out an angiogram, or other exploratory test, a year after diagnosis with KD.  However, an angiogram is not performed in very young children without careful consideration.  We were told that the catheter that is used is kind of a one size fits all; they will use the same sized tube to enter Freya’s tiny arteries that they would use on an adult.  We were also advised that young babies’ arteries are quite sticky, and have been known to grasp onto the catheter,  causing the artery to spasm.  This can cause a heart attack.  The Cardiologist said that the hospital will be reluctant to carry out the procedure on Freya at such a young age (she will be 14 months old when she is a year post-diagnosis), but said that she feels that Freya is a special case and that it is important that this step be taken.  She says she will convince them to do the procedure.  I replied, “Thank you…I think.  I mean, on the one hand you are keen to move things forward and a clear result could end with us stopping the aspirin.  But you are expediting a potentially risky procedure and I am not sure how I feel about that.”

But I do trust her.  I think.  Didn’t stop me from e-mailing the world’s leading Kawasaki Disease expert for her opinion though…

And that’s where I am right now.  I’ve written this down to provide an update, but mainly to try and work out how I feel about it all.  I’m not sure, I feel quite numb.  So I am just going to dump all the crappy thoughts that are running through my head right now, and hopefully the answers will come to me over the coming days or weeks.  Excuse the rantings of a confused mind…

  • Here we go again, as soon as I let my guard down and ignore my instincts, someone goes and throws a curveball!
  • I knew this was going to happen!
  • I knew that there was a chance that the fast improvement was too good to be true.
  • What if I lose her after all?
  • What if I can’t bear to watch her go under general anaesthetic again? It was like watching her die on that table.
  • What if she doesn’t wake up from the anaesthetic?
  • What if she has a heart attack?
  • What if she dies?
  • What if she dies because of the procedure and they tell me everything was ok anyway?
  • What if there are signs of stenosis? They can’t operate on her this young anyway.
  • What if there are no signs of stenosis, but it happens when they’re not looking and she dies?
  • What if we say no to the procedure? How much potential danger would we be putting her  in?

I think that’s about all I can figure out from the fog right now.  Somewhere in there, though, there is a tiny voice of hope.  ‘Ant’ is doing her best to drown her out, but I hear her.  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.  Maybe, (and I don’t consider myself religious so this just came as a huge surprise to me, hitting me like a juggernaut and reducing me to sobs), just maybe, someone heard my prayer….

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A Recipe for Disaster

Posted on by Bluemama

So it seems I am suffering with post-traumatic stress disorder with a nice deep filling of depression, topped with a scattering of anxiety sprinkles.  If I were a cake, I’d be a fruitcake.

I was thinking this morning, after I left my second Cognitive Behavioural Therapy session, about what mental illness looks like.  What does someone suffering with mental illness look like?   I guess they look haggard and worn, frayed around the edges.  Scruffy, definitely; they wouldn’t have washed in weeks.  Tired, with dark purple circles under those sad eyes.  Hair scraped back in a ponytail in an attempt to disguise the oil slick it has become from days of neglect.  Shoulders drooping, head hanging down, slow lumbering gait where others confidently tread.  Yes, I reckon that’s about right.  Except it’s rare that you would get a real close look at one, because they’ll be under a duvet, or rocking in a corner; the lesser spotted hermit…

Sometimes, mental illness looks like this…

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“Nooo!” I hear you exclaim.  “She can’t be depressed! Look at her, she’s smiling.  And I know she isn’t depressed, because she lives in that nice house with those three gorgeous kids.  Anyhow, I saw her in the Wine Bar last week and she looked like she was having a great time!”

Don’t get me wrong, there are plenty of people suffering with a mental illness who meet the description above.  I’ve been there myself, duvet pulled up over my head, praying for it to be bedtime again.  But this time, it’s not like that.  Mostly I look like the woman in the picture.  Sometimes that face has to be painted on, that smile fixed in place with staples invisible to the naked eye.  Other times it’s real, and I feel real joy.  Sometimes, behind closed doors, when nobody is watching, I lay curled up in the corner of the sofa and cry.  I could cry right up to 3pm, then paint that face on and pass pleasantries with you in the school playground at pick up time.  Being a great actress comes with the territory.

I don’t want you to think that I am fake.  I’m possibly one of the least fake people you will meet.  It might be an effort to put on that smile sometimes, but I am generally a very sociable person and if I didn’t feel like smiling before we started talking, it’s very likely that I will be genuinely smiling by the time we part company.  I’m like that; people lift me.

And suffering with depression, either long-term or temporary, doesn’t mean that I am miserable all of the time.  In some ways, whilst this illness can be debilitating, I think I am one of the lucky ones.  I am very tuned in to my thoughts and emotions.  When I suffered with post-natal depression after my first daughter was born (nearly 12 years ago now), it was different.  I was severely depressed.  I believed that my husband’s family wanted to get me sectioned so they could have my daughter all to themselves.  I considered leaving, and telling nobody where I was going; figured I’d go live in some little hut by a lake in the Outer Hebrides or somewhere.  I thought everyone would be better off without me, and I would be better off without them.  On my worst days, I did not recognise myself in photographs.   And on worse days than that, I actually contemplated how much easier life would be if my daughter could just be gone…

I’ve always been a sensitive, thoughtful soul.  I guess I was predisposed to this kind of malady.  In my teens, my old bedroom at home was painted black and I wrote a lot of poetry.  I’ve never found it hard to cry.  I think I’ve cried an ocean in my years on this Earth.  I don’t believe I had ever been depressed before my experience with PND.  A bit of low self-esteem maybe, but not depressed.  But PND altered me; it’s like a part of me was broken that could never be repaired, and was the catalyst for years of on-and-off suffering with various mental health issues.  The last 12 years have been on the whole great, though peppered with periods of counselling, cognitive therapy and anti-depressants.  The last time I was prescribed anti-depressants was when I was pregnant with my youngest daughter.  The only thing that stopped me taking them was the risk of congenital heart defects for my baby; those of you that follow Freya’s Story will appreciate the irony in that.

Mental illness covers a whole spectrum of serious disorders in a person’s behaviour or thinking, with over 200 different conditions to choose from. Now, that was a bad choice of words; this isn’t something anyone chooses.  But you get my drift.  And although many people will suffer, with or without a diagnosis, with the same conditions all over the globe, the degree to which they suffer will vary with every individual. What I am going through this time is very different to anything I have suffered with before.  Firstly, the post-traumatic element is new; I hadn’t faced any real trauma before my daughter was diagnosed with a life-threatening illness last year, so that’s a first for me.  The treatment I am receiving is specifically designed to expel the flashbacks and help my brain to process the memories that have got a little lodged on their way to my long-term memory.  The depression isn’t new, however it has been nicely disguised, hiding in the shadows of the PTSD, waiting for the right moment to strike.  It felt now was a good time.  And then there’s the anxiety, and oh boy ain’t that a treasure!

So, just how much fun is it to live with me these days?  I guess you could ask my husband or my kids, but like I said, I’m pretty in tune with my thoughts, emotions and behaviour to give you a pretty honest view of that.

I’ve talked about PTSD before.  I’ve shared some of the flashbacks and intrusive memories that I have suffered since my daughter was diagnosed with Kawasaki Disease last June.  I’ve told you that sometimes, when I look at Freya for long enough, her face morphs into the sad, scared, sick little baby that pleaded with me with her eyes from a hospital cot.  I was embarrassed by the diagnosis.  You associate it with war veterans.  But, it does happen to people who have suffered a critical illness, or in my case watched a child suffer.  There’s a big difference between a flashback and a bad memory.  We all have bad memories from time to time; a smell that reminds us of our first love, a song that can recall memories of a lost loved one, events that remind you of the time you were badly beaten up at school by that one girl in your GCSE year (https://bluemama.co.uk/2014/12/01/one-girl-one-day/).  Bad memories I can deal with.  They are long-term memories, and as such when recalled the emotion doesn’t hit you with the same intensity that it did at the time.

A flashback puts you right back in the original situation, and all the components of that memory – the emotions, the sounds, the smells, the physical surroundings – are replicated with all the intensity of the event itself.  Apparently when these happen, I have to tell my inner child, the victim, that it is ok for them to remember, but that I will help them through it.  I know, right?!  But joking aside, the tips I have been given have worked, and I haven’t had what I would call a ‘real’ flashback for a little while now.  Removing the spare cot from our room was a stellar move and my brain no longer keeps me up until the wee hours to avoid going to bed.  Cognitive Behavioural Therapy that specifically focusses on trauma, exercises ‘mindfulness’ to overcome that trauma by training your brain to accept the thought, but to prevent it from lingering by focussing your attention on how the thoughts made you feel, rather than the memory itself.  I’m sure I’ve just understated the treatment completely, but that’s it in layman’s terms.  And it actually seems to be working.  We haven’t yet worked through the key reason for my condition (Freya’s illness), instead we are working through three other life events which evoke a particularly poignant memory (good or bad).  The idea being that you practice the techniques on some more dormant memories, so that by the time you reach the biggie, you’re ready for a fight.  Today we practised the technique on the memory of the death of my grandfather.  I’ve been told not to reflect on that outside of the sessions, so I shall leave that there.

The depression is different again, and kind of fills in the spaces between the PTSD symptoms.  It’s a general feeling of low mood, varying in intensity depending on the day, the hour, the situation.  I can’t describe it any better than it being like a dark cloud permanently looming above my head, casting a shadow over me.  The good thing about clouds, is that sometimes they shift a little in the breeze.  A strong wind can brush them off completely for a time.  And the sun sometimes manages to break through and cast a beacon of light upon my path.  In some ways, I have learned to control the weather.  In the PND years, I couldn’t have done that.  But as I have said, I am more self-aware now.  I know that even if all I want to do it bury my head under that duvet, I have to choose another way.  Having kids kind of forces my hand.  With my firstborn, I didn’t have to be anywhere, so it was far too easy to stay in my pyjamas all day and wallow in sorrow.  I know some victims of mental illness find themselves in that place, regardless of their personal circumstances.  Luckily, this hasn’t taken all of me, and I do function on a pretty normal level most of the time.

How does depression affect me?  Well, I go a bit into myself sometimes.  I think a lot.  I cry a lot, not always for any reason.  I question my capabilities as a mother, as a wife, as a person generally.  I lose sight of my self-worth.  I retreat from people when I feel hard done to, and the depression makes sure that the further I retreat, the higher the wall becomes.  I have automatic negative thoughts (‘Ant’ – you might have met her in previous blogs.  She looks a little bit like me, but a lot like that girl that beat me up in my GCSE year.  Pretty girl, likes to stick the boot in now and again).  My thoughts tend towards the catastrophic.  And I get a bit hung up on signs.  Numbers, magpies, white feathers, a necklace breaking; all signs of impending doom for me or my relationships.  On a good day, it doesn’t affect me at all.  No more than a grey cloud hovering above, threatening rain, but not quite managing to defeat the sunshine.  I’m stronger than I think I am.

For a more insightful description of how depression feels, I don’t think there is anyone that has done it better than The Black Dog Institute when they put out this video on You Tube (https://www.youtube.com/watch?v=XiCrniLQGY).

And lastly there’s that little treasure, anxiety.  That’s a whole new ball game.  Aside from the nasty flashbacks, I have found the anxiety the most debilitating and damaging of all.  The Mind website provides a pretty comprehensive list of the symptoms of anxiety, so I thought sharing that was as good as any list I could provide (http://www.mind.org.uk/information-support/types-of-mental-health-problems/anxiety-and-panic-attacks/anxiety-symptoms/#.VsTInsexrjI)

Physical sensations: Psychological sensations:
  • nausea (feeling sick)
  • tense muscles and headaches
  • pins and needles
  • feeling light headed or dizzy
  • faster breathing
  • sweating or hot flushes
  • a fast, thumping or irregular heart beat
  • raised blood pressure
  • difficulty sleeping
  • needing the toilet more frequently, or less frequently
  • churning in the pit of your stomach
  • experiencing panic attacks
  • feeling tense, nervous and on edge
  • having a sense of dread, or fearing the worst
  • feeling like the world is speeding up or slowing down
  • feeling like other people can see you’re anxious and are looking at you
  • feeling your mind is really busy with thoughts
  • dwelling on negative experiences, or thinking over a situation again and again (this is called rumination)
  • feeling restless and not being able to concentrate
  • feeling numb

That’s how I feel a lot of the time.  Add to that the fact that I have developed a hypersensitivity to certain sounds, which make me want to explode (want to? You do Jo!) and I’m pretty much a coiled spring of anxious tension from dawn ’til dusk.  You can imagine how fun it must be for my husband these days!

But.  And it’s a big but. It’s not all bad.  I am that girl in the photograph.  I do smile, and quite often that smile manages to reach all the way up to my eyes.  I want to do things, see people, have fun.  I like to escape the confines of my daily life sometimes.  I want to be happy.  I don’t want to cry, or shout, or feel inadequate.    I want my family to love me, not to worry about me or look at me with judgement when I fly off the handle for what seems like no reason at all to them.  I have things I want to achieve, places I want to go.  For now, I am giving the counselling route a try.  If things don’t get any easier anytime soon, I will consider medication.

No journey with mental illness is easy.  Some might be easier than others, and I am open to treatment and very self-aware.  I know that right now I have feelings that could result in life-altering decisions.  I also know that those feelings might not be real, and until the fog lifts I will hold those thoughts.  Thoughts are not facts.

To anyone who has ever suffered, or is suffering still, I hope you find your own way to mend.  There is help, but it can often be hard to ask for it, sometimes even harder to find.  I talk candidly about myself and my experiences now.  I haven’t always.  When I started this blog I was too afraid to make it public for fear of judgement.  But this last year has taught me some lessons about not holding back, so now my heart is firmly on my sleeve for all to see.  Judge, don’t judge.  It’s not important to me anymore.  And if I ever offend with a too glib portrayal of mental illness, please know that a) I only describe what mental illness means to me, how it has affected me, and b) that humour has often been my way of handling the most negative of situations.

One in four people will suffer with a form of mental illness in any given year.  Take a look round you, at your family, your friends.  If it’s not you, it could be one of them.  Be kind, always, because you never know what personal struggles other people may be facing, even when they seem to be wearing a smile.

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Follow me on Facebook at www.facebook.com/bluemamablog and if you are interested in learning more about Freya’s Story and Kawasaki Disease, you can visit www.facebook.com/freyasstory 🙂

 

 

All I need

Posted on by Bluemama

You are all I need Peanut.  Sure, there are other people that make me happy, but no-one has the power to make the sun shine through the rain like you do.  For me, you have become a symbol of strength and love, and a living example to all of us that we really should grab this life with everything we’ve got, because there really are no guarantees.

Quite often that makes me sad.  I can’t help but wonder what your future holds; sometimes I wish I had a crystal ball so I could see your life unfold and be happy that this thing isn’t going to get you one day.  But I guess there’s no fun in that is there?  So I have to hold on to hope.

You have a cardiology appointment next week, sweetheart.  I always find myself a little more melancholy than normal, and a bit more anxious that I usually am, as the date approaches.  The problem with me, is that I like to be in control.  And this most definitely does not allow for me to have control.  None.  I don’t expect the appointment to give me any surprises.  Not bad ones anyway.  Your condition, if it gets worse, is unlikely to get worse any time soon.  We may even be blessed with improvement, but let’s not jinx things, eh?  The best I can hope for is no change.  And even then, it’s a limited view.  What’s frightening is that we only know what we can see.  An echocardiogram can only show us about 3mm into your arteries.  Beyond that you need an MRI scan, but they have no plans to go looking yet.  I wonder why?  Maybe because you are so young, it would be preferable not to sedate you. I have to remind myself that the only reason you didn’t need to be sedated for your last MRI was because you were too sick to care.

I think, to all intents and purposes, we could be bold enough to say you are out of the woods for now.  Can I say that?  Should I say that?  The scientific part of my brain keeps telling me that the only thing that can cause you any problems is biology; my words will not be the cause.  Thoughts are not facts.  For now, I have two questions for the Cardiologist.  “What will I need to do throughout her life to protect her heart?”  and “Remember when you took me in a room and told me about the risk of a coronary aneurysm rupture, and how you told me that you could do nothing to prevent it, and that if it happened she would be gone?  Well, do you think that is a risk now?” Let’s see if we can get some questions answered next week shall we? So you will need to behave yourself.  You won’t! You’ve been trying to take over the echo since all this started; next week you are going to be rolling, and grabbing, and trying to crawl off the table!  Things just got interesting!

So it’s just dawned on me that I never had one of those baby books, the kind where you write all the milestones down.  To be honest, I had books with your brother and sister, but the novelty wore off a few weeks in and there are two half-finished (half-started?) baby record books gathering dust in the loft.  And then I thought I could do it here.  So let’s see, what can I tell you about you….

You have been sitting up for a while now.  For some time it seemed like you were never going to get there, but you did.  Your preferred mode of transport continues to be the ‘commando crawl‘ – you’d be fantastic on one of those military assault courses! And you’re fast Peanut, real fast! When you spot something you want, you can be at your target in a nanosecond.  I have to be on full alert – generally the thing you spot is something you shouldn’t have and everything goes in your mouth.  When I thought I’d cleaned up all the pine needles from the Christmas tree, you still somehow manage to find them.  And eat them.

You have a real sense of fun.  You are going to be like your brother; full of mischief.  You are always doing something, always busy.  You’ve just started getting up on your knees too, which means more of the world is within your reach, and I can see how exciting that is for you.  You are always in my kitchen cupboards, always pulling books off the bookshelves, always finding the one thing amongst all the other things that you are not allowed to have.  You are going to keep me busy!

You have a few words in your vocabulary.  “Daddy” has been a favourite for some time.  There’s something very cruel about ‘dadadadada’ being the easiest sound for a baby to make.  You’ve said a clear as a bell “Mama” once.  It was magic.  You’ve not said it since.  Your absolute favourite is “Uh-oh”, which was remarkable when you first said it because it alerted me to the fact that you had dropped something, like that time you dropped your toy in Marks and Spencer and I wondered why you wouldn’t stop saying “Uh-oh”.  Now it seems that “Uh-oh” is a catchall word for everything.  I think it means you are hungry, thirsty, tired, sad, angry, happy…it’s a one word fits all kind of thing!  I’ve been able to make out a few other discernible words; doggy, dinner, bye-bye.  You know your sister.  She’s Eliza.  That’s “a-la-la” to you.

And you laugh sweetheart, you really laugh.  Just a couple of weeks ago, we needed to tickle you to incite a giggle.  Now you laugh at everything and everyone! You laugh at trees and flowers, birds and cats, me, your dinner, everything! Just the sight of those tickling fingers coming your way and you are reduced to an uncontrollable cackle.  You see joy in most things, and you are slowly teaching me to do the same.

But, it isn’t all hearts and flowers my little cherub.  There is one thing that is currently driving me crazy, and that’s the scream! You have developed a squeal that would rival any dolphin, and brings half the neighbourhood’s dogs to our doorstep.  I think, roughly translated, it means “Hey, you, why are you not giving me your 100% total undivided attention right at this very second and every second after it?” but I don’t talk baby, so who knows if I’ve got that right.  Most mums could probably ignore it.  Unfortunately, I suffer with anxiety, and have real trouble with noise, so that little scream goes right through me and rings in my ears.  Let’s hope it passes soon (either the screaming or the anxiety – both would be nice).

You do still hold the title of ‘Epic Sleeper’, and if I didn’t know you were real I would start to wonder if you were some kind of clockwork toy.  I’ve looked for the key, I can’t find one.  The daylight hours are short with you Pickle.  You wake around 7am (sometimes later), nap for anything up to 2 hours at about 10am, and from 4pm to 6pm your constant squawking acts as a reminder that it is nearly bedtime.  6pm comes, you’re milk-drunk and sleepy and off you pop to bed, and we don’t hear a peep from you ’til morning.  So, on a 2-hour-nap day, I figure we get about 9 hours of you.  The thought of going back to work and that becoming 1 hour is unfathomable.

I don’t know if you will ever remember this time in your life.  I hope you don’t. Your first year has been blighted with illness, fear, hospitals, and me.  And when I say me, I don’t mean that I’m not a good mum to you.   I shout sometimes because the anxiety builds up inside my like gas in a pop bottle, and sometimes your brother or your sister, or a noise, or a setback, shakes me up just a little too much and the lid blows off.  And I am often sad.  I cry.  A lot.  I can’t tell you that I love you without tears pricking my eyes; I hope you don’t grow up associating love with sadness.  Sometimes when I look at you for too long, your face becomes the face of that tiny baby pleading with me with her eyes.  I don’t sleep that well either, because I’m always straining to hear you breathing on the monitor.  When I wake, it feels like I have slept holding my breath, and I am frozen in my bed until I hear a shuffle or a snuffle from you.  I am sure all this will pass, and I am getting help for it so that I can get this under control before you do start to notice that mummy is always sad.

It is lucky, then, that I adore you.  You are a pleasure to be around (which is lucky indeed, as you are the only person I see very much of!).  If  you were a different baby, I reckon I’d have cracked up by now.   But you, my dearest Freya, are the light in the darkest of days.  Sometimes, you look at me with those ocean deep eyes, and it’s like your very soul is speaking to me; “I’m gonna be ok mummy.”  

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An Exercise in Mindfulness

Posted on by Bluemama
mindfulness
ˈmʌɪn(d)f(ʊ)lnəs/
noun
  1.  the quality or state of being conscious or aware of something.
  2. a mental state achieved by focusing one’s awareness on the present moment, while calmly acknowledging and accepting one’s feelings, thoughts, and bodily sensations, used as a therapeutic technique.

(Source:Google)

The thing is with this kind of stuff is that it all sounds a bit new age, off in a forest finding yourself whilst hugging a tree, doesn’t it?  Well it does to me anyway.  But I was given my homework at the last session (my first session) so I thought I should play along if I really wanted to beat this thing.  The counsellor gave me a pile of papers last week, and had ticked a number of the exercises that she wanted me to practice.  I am undergoing Cognitive Behavioural Therapy to deal with trauma; I apparently have post-traumatic stress disorder (PTSD).  I say apparently, because to be honest I’m pretty embarrassed with the diagnosis.  I mean, you hear the word PTSD and are immediately met with images of soldiers on the frontline in Afghanistan, or firefighters coming out of the Twin Towers.  I have never once in my life imagined a normal mum, with a normal life, who can’t shake off the events of the last year when her daughter was diagnosed with a serious illness.   And that is who I am (except maybe less stress on the ‘normal’).

Anyway, I shared an image on my social media pages that I created last week (my brain), designed to illustrate what goes on in the mind when it’s owner has a bit of a tough time handling a traumatic event.  Although I don’t think I am worthy of the PTSD diagnosis, I do understand what is going on up there at the minute and it helped me to show it in a diagram.  The long and short of it (no pun intended) is that the events of last year have become too big for my brain to process.  Those short-term memories should have made their way down into the long-term memory by now, but they’ve got themselves stuck.  And because they are stuck in my short-term memory, they are there, all the time; a constant reminder of those dark, dark days.  Sometimes they are that there, that it feels like they are here.   Now let me tell you there is a massive difference between recalling a painful memory, and intrusive memories and flashbacks.  I was ‘blessed’ with a pretty remarkable memory, particularly for words.  I can recite poetry that I’ve not read in years, I can recall the exact way I felt when I was thirteen years old and my Grandad passed away, and yes dear Husband, I can remember what was said in that argument in 1998.  I don’t seem to be able to let go of things that have evoked a strong emotional response.  Not a bad thing, unless you feel most things with the intensity of a Tsunami, in which case you find yourself with a hell of a lot of stuff up there.  But I digress slightly.

I’d say the main difference between a memory and a flashback is the intensity of the emotional response.  Of course we all feel a little sad when we recall a loss, or a particularly difficult time in our lives.  But when those events have been properly processed, they evoke just a small amount of the emotion originally felt.  When those events haven’t been correctly processed because the brain just couldn’t manage the overwhelming task, they are recalled with all the strength of emotion that was felt the moment that it happened.  I think it might help (me more than anyone, perhaps) if I tell you what kind of intrusive thoughts and/or flashbacks I am talking about.

Intrusive Thoughts

These vary from images that flash in front of my eyes when I am least expecting it (though not to be confused with a ‘flashback’ – you’ll see why later), to a little Voice of Doom in my head that likes to play Devil’s advocate with the ever-so-slightly-smaller Voice of Hope.  You might have heard me talk about ‘Ant‘ before (Automatic Negative Thoughts)?  Well she’s a whole other kettle of fish!  I don’t seem to hear much from her these days, but I often wonder if she is pulling the strings of the Voice of Doom.  Ok, so now I sound like I have multiple personality disorder, and whilst I do not profess to be particularly knowledgeable on that subject, I can confidently say that I do not! These parts of the brain exist in all of us, I just like to give them a name as we are so well acquainted.

So, let me give you a few examples.  

If you are old enough (that is, as old as me) then you might remember that 1980’s toy, the ViewMaster?  Hang on, I’ll find you a pic…Unknown.jpg…There you go.  When I close my eyes, it’s like an automatic ViewMaster, presenting snapshot after snapshot of memories.  Bad memories.  Mostly it’s Freya; lying in her hospital cot pleading at me with her eyes, gasping for breath, disappearing into the MRI tunnel or her eyes rolling into the back of her head as she was forced into sleep on an operating table.  The worst snapshot is the one of her lifeless, limp little body at the moment that I realised this was going to be bad.

Sometimes, it’s not Freya, but me that I see.  Like watching my own life through some kind of out of body experience.  That’s what happened when I went to bed last night.  Image after image of all the moments when I felt most frightened and most vulnerable during my 6-week incarceration courtesy of 3 of Yorkshire’s finest hospitals.  The moment the Cardiologist took me to a room and told me she couldn’t do anything to save Freya from the worst of risks.  The moment I tried to go back to the HDU, to my little girl, and slid down the wall because I couldn’t bear to take one more look at her if I was going to have to lose her.  The times when visiting hours were over and my lonely evenings began.  The long walk down those LGI corridors at 3am when my body betrayed my resolve to stay awake by Freya’s bedside all night (they wouldn’t let me sleep on the ward for that period).  And standing in the hospital Chapel doors, not really knowing why, but writing a prayer all-the-same; “Dear God, prove them wrong.”

Those are some of the things that I see when I close my eyes.  So I don’t.  I stay awake for as long as I can possibly keep my eyes open.  Partly because that means there are less hours for Freya to sleep ‘unsupervised’, partly because of what lies behind closed lids.

And then there are the thoughts.  The what ifs, buts and maybes.  I’ll be brushing Freya’s hair, and wonder whether she will have her brother’s curls…“What if you never see it?”  I’ll be listening to her gurgle and babble away in that special little language of hers and think about how I can’t wait to be able to chat with her…“As long as nothing bad happens before then.”  I swat those thoughts away like pesky flies, but the sneering tone lingers.  Every thought I have about the future is met with a voice warning me not to tempt fate.

Flashbacks

These are less common.  It’s hard to tell the difference between a flashback and an intrusive thought/memory sometimes.  I have mini ‘flashphoto’ moments at times.  I don’t know if you have ever seen that movie with Brad Pitt, Se7en?  <<Spoiler Alert>> There’s a scene right near the end when he opens the box and just for a split second you see an image of his wife’s head in the box.  It’s that quick, you don’t even know if you really saw it, and it’s only when you’ve seen it a few times that you start to expect it.  Well that happens to me with images of Freya, except sometimes the image sharpens until it has altered reality.  Just yesterday, I looked down at her little post-bath face framed by a fluffy white towel and was immediately taken back to the moment I first held her in my arms, wrapped in a hospital issue blanket.  Without any warning, a rush of sadness overwhelmed me and the tears that are always there at the brink started to fall.

I think for me, the differentiation between the intrusions and a flashback, is in both the intensity and their ability to alter reality.  The intrusive images are played to me one by one, like you would see with every click of that little red ViewMaster.  They are disturbing, upsetting and unnerving.  But I can shake my head and try to make them go away.  The flashbacks are different.  Whether it be seeing Freya’s face change right in front of my eyes to the point that I am again holding my sick child in my arms, to reliving a particular event, they steal into my life without warning and manage to transport me back in time to when it was all very real and very raw.  When the ‘real’ flashbacks happen, I am cold, rooted to the spot, I tremble, I sweat, my chest tightens and I can’t breathe.  And I cry, I cry a lot.

There have been a number of triggers for the ‘real’ flashbacks.  Mainly smells and sounds that take me right back to those weeks in the hospital.  The phone rings at the wrong time and it’s the monitors beeping incessantly to tell the nurses the IV has stopped running, again.  Freya’s bedtime toy starts to play it’s little tune in the middle of the night, and we’re right back there, in that cubicle, her eyes staring blankly at the glowing seahorse that soothes her to sleep.  I can’t sing a certain song, or hear certain pieces of music without being stopped in my tracks as my surroundings and environment change around me.  Having Freya’s old cot by the side of my bed is a major trigger.  The silhouette of the bars in the dim light of our bedroom at night; I find myself constantly checking the baby that isn’t there (she is in her own room now).

I feel like I am constantly being hijacked by my fears and my memories.  They don’t want to let me go, they don’t want me to let go of them.  And as warped as it might sound, I’m not sure if I want to let go of them… 

Letting Go

What does that actually mean?  You know what I am most scared of?  I’m scared of beating this, and forgetting.  Scared I’ll stop appreciating what we all went through and begin to take life for granted.  Scared that if I forget how it felt, I won’t fight to make sure Freya has the best life she can possibly have; that we all will.  And because I feel like my whole self has been defined by the events of the last year, I am scared that if I let it go completely I will not know who I am, and I will be lost.

But I do know that I have to let this go.  I have to open my mind to the treatment I am being offered.  I have to shift these things from my short-term memory down into the long, where they will never be forgotten, but where they will cease to have control over my life.

Treatment

Today I started the treatment in earnest.  During the session, I had to undertake a Mindfulness of Emotions exercise.  I was already crying before we started; I had been asked to think of 5 events in my life that had had either a positive or negative emotional effect upon me.  Always the over-thinker, I struggled to think of them and my mind went blank.  I thought of a couple of things – Grandad dying (bad), Eliza’s birth (bad), Finlay’s birth (good)… Nothing else would come, absolute blank.  Obviously the situation with Freya goes in there at number 5, but we had to agree to leave number 4 for next time.  I think the plan is that you practice the techniques whilst processing some old memories/events so that by the time you reach the biggie you are an expert in handling thoughts and emotions.  Something like that.

So, I sat in my chair opposite the therapist, and she handed me some paper towels to wipe my eyes (I have no idea why they don’t realise they might need tissues for these things!).  She told me to close my eyes, lay my feet flat on the floor and sit straight with my hands on my lap.  All I had to do was to sit still, feel my body in the chair, and when a thought came along I was to accept the emotion that it brought with it, and dismiss the thought. What actually happened was a full blown panic attack.  I felt the anxiety building as I sat there facing the counsellor with my eyes shut (did she not hear that I have an issue with that?!)  I was conscious that my feet wouldn’t stay still, and I was wringing the tissue in my hands.  Every inch of me wanted to get up and run, and it was one of the most uncomfortable things I have ever done.  When I stopped breathing, and then started gasping for breath (I know! Idiot!!) I had to open my eyes.  The counsellor had a chat with me about what had happened, and she said that I was trying to run from what I might see with my eyes closed, and we should start again.  This time I would face the window, so I might feel under less scrutiny.

The remaining 15 minutes of the exercise were tougher than I imagined.  But in that state of quiet awareness, I could actually see the thoughts arriving and feel the physical effects that those thoughts were having on my whole body.  It was intense, and surprising.  Sitting there in that state, I was acutely aware of how my body reacted to the thoughts as they intruded.  My toes were actually curling, my whole body squirmed, and my breathing became more rapid.  And then, of course there were the tears, but I never had that much of an issue producing those.  Sitting there allowing myself to feel the emotions whilst trying really hard to tell the thoughts to bugger off, I felt like one of those shove ha’penny machines at the amusement park.  A mind full of thoughts spilling over into my consciousness, causing the emotions to come rushing out in waves.  Towards the end I felt bruised.  But I did notice that within the last few minutes I began to notice the sounds around me, and no longer noticed the thoughts.  Cars going by the window, the scrape of a chair from the floor above, the buzzing of the PC on the desktop.  And as I noticed those noises, and the noises in my head began to quiet themselves, I felt my shoulders drop and I was still.

My homework is to practice that every day for at least 15 minutes.  As I am not sleeping, and am delaying bedtime, the counsellor suggested that I do the exercise in bed.  It’s like training your brain to accept thoughts without entertaining them, to feel the emotion that those thoughts evoke, but to focus on something else so that those emotions can be let go.  Right now, my thoughts are being overindulged.  They need putting on the naughty step, and I need to stop allowing them to dictate how I am going to live my life.

 

Wish me luck.

To Immunise or not to Immunise…

Posted on by Bluemama

…That is the Kawaquestion!

If you’ve been following Freya’s Story through my blog or on Facebook (www.facebook.com.freyasstory), then you’ll know that one of the hurdles I have been trying to get over since her diagnosis and treatment for Kawasaki Disease is the question of when to immunise.  When is the important question here – it is not a question of ‘if’ for me.  Freya is my 3rd child; I had the older two vaccinated in line with the standard UK immunisation schedules without hesitation.  They both had the (then controversial) MMR vaccination that was vilified for years, for those claims to be later contradicted by the very doctor who made them.  I am not an antivaxer (yes, that is a word that is banded around various mum networks).  I can’t say I’m a provaxer either to be fair; in all things medical I am a conformist.  I trust the NHS and the doctors to have made the right decisions.  Well I used to anyway.

Now before I go on to share all the information I have in relation to this subject, there are a couple of things you should know.  First of all, the information I have received is contradictory to say the least.  I’ve even had different information from the same doctor, just on a different day.  And therein lies one of the biggest issues, and the key reason why we should be campaigning for standard protocols for treatment and care of Kawasaki patients.  But that’s a whole other blog.  Secondly, I take no responsibility for the decisions you may make in relation to this issue.  I am not a medical professional; I am just a mum that wants to do the right thing for her child.  I could not protect my baby from Kawasaki Disease; I have to be able to protect her from the other nasties, if I can.  I will share the information I have and where I’ve found it.  You also need to understand that Freya’s case is an individual one.  We certainly haven’t found a doctor in the UK who has received a patient as young as Freya where Kawasaki’s is concerned.  Generally children are older (commonly between 6 months and 5 years) and have therefore already begun their immunisation journey.  Infants diagnosed with this disease have often already had at least the first tranche of jabs (leading some to believe the vaccine to have been the trigger that KD needed to start it’s evil – a theory that I don’t discount, in fact I find it a very interesting theory with some validity and would not be surprised if it is confirmed as one of the triggers in the not too distant future).  Indeed, some of the vaccines state an increased risk of Kawasaki Disease in the patient information – information we often don’t read before we give consent for the needle to go in.  Again, I do not want to be a scaremonger, and it is absolutely not my intention to send cats amongst pigeons.  I’ve already said I am a provaxer.  I am pro-choice in all things – but I believe in those choices being informed if you are someone like me who needs to know it all (and often thinks she does, lol!).  

Freya was 7 weeks old when she became sick.  She was hospitalised on the very first day that she showed a single symptom (fever) and spent a number of days on a paediatric HDU, several weeks in a Children’s Hospital, and a week on a Cardiac HDU.  We hadn’t yet seen a health visitor, and the appointment for her first set of immunisations (8 weeks) has just come through.  I guess due to her condition, and later the treatment she received, it wasn’t possible to start the process of vaccinating with Freya whilst she was in the hospital.  She was 7 weeks old when she went in, and 13 weeks when she came out, so she was already behind schedule.  She received a blood transfusion, intravenous immunoglobulin (a blood product) and intravenous and oral steroids.  All of these have an impact on the immune system, rendering vaccination difficult for a certain period of time.  And I can’t be more specific than that, because that is one of the biggest areas of contradiction I have come across when researching this subject, and the reason why now, at nearly 10 months old, Freya has not had a single vaccination.

Some might wonder why that is an issue.  Plenty of parents (those antivaxers) make the decision not to immunise their children against some or even all of the diseases that the immunisation schedules seek to protect them from.  There are children who are unable to receive the immunisations because of poor, weakened or non-existent immunity.  We vaccinate the many to protect the few; herd immunity.  I could trust that everyone else has been protected, so Freya will be ok among the herd.  But, what if…  And then there is chicken pox – we don’t routinely vaccinate for that here in the UK (they do in the States).  If you Google “chicken pox and aspirin” you will find one big reason why aspirin and kids don’t mix; Reye’s Syndrome, a rare but potentially fatal illness linked to the fever associated with Chicken Pox and Influenza in children taking aspirin.  Ok, so the link has been found where high doses of aspirin are taken, and not yet with the low anti-platelet doses that a KD kid is prescribed, but nonetheless it’s a nasty illness and one I don’t want to take any chances with.  Freya has been through enough.

So what happens if you have a child who has not been immunised, and you are concerned about them coming into contact with what others would consider pretty innocuous illnesses?  Let me tell you what happens with us.  Freya has not been to a baby group; not baby massage, or baby music, or baby yoga.  Hell, she hasn’t even been to a playgroup, and when my older two get invited to a kids party, Freya stays at home.  Don’t get me wrong; we have not become social recluses.  Instead I apply my common sense to the activities we will undertake.  I know there might be someone in the coffee shop who has the flu.  Why is that kid in the shopping centre not at school? Could they have chicken pox?  I can’t hide us away from the whole world, but I can reduce the risk of her coming into contact with these nasty germs and bugs.  I call it damage limitation. She has one or two little friends that she sees from time to time, but only when they are well.  And don’t forget she has an older brother and sister who are exposed to all manner of things at school every day – we don’t make them wear a mask!  It is a source of sadness for me though.  Freya is such a happy, sociable child, and I worry about the effect this lack of exposure to her peers might have on her development.  I want her to laugh and play with other children, to learn how to share, to grow bonds and discover new things.  Instead there is a lot of singing and dancing going on in this house, which isn’t a bad thing (unless you’ve heard my singing!!). And with a bit of luck we can catch up with those immunisations soon and provide what we believe to be a little protective bubble around our child before it is too late for her to start over.  The knock-on effect of KD will be huge – when I return to work, she will have to go to some form of childcare.  She will be over a year old, and will never have been with anyone else other than her close family.  That’s going to be a tough one for both of us to handle…

Let me go back to the beginning of Freya’s immunisation journey.  While we were in the hospital with Freya we were advised that she shouldn’t have the immunisations, first because of her condition, and secondly because of the medication.  A lady used to pop her head in our cubicle door every other day with an immunisation leaflet and I repeated often that we had been advised Freya would have to be left to catch up.  I was promised an individualised immunisation schedule to leave the hospital with; it never materialised.  I made a number of calls to the hospital to enquire about when I could start the process, and to the Health Visiting team to ask them to stop the weekly postal reminders telling me what I already knew; Freya had not received her first immunisations.  Eventually I got the call from the hospital that advised I could give her any killed (inactive) vaccinations immediately (she was discharged one month after treatment for KD), but that I should wait 3 months post steroid treatment for any live ones.

I did a bit of research, because I was convinced there should also be a timescale for receiving vaccinations after a blood transfusion.  All avenues confirmed that vaccinations should not be given until 6 months after a transfusion.  Not to mention the varying timescales quoted for giving vaccinations after IVIG!  But all my hospital ever referred to was the steroid treatment, I guess because that is an immuno-suppressant.  But what of the other things? Had they forgotten what she had been given? I felt uneasy with the advice, so I sat on it for a while.

At a follow-up appointment with Rheumatology, I asked about whether Freya should be vaccinated against Chicken Pox (Varicella).  The doctor said that in the UK we only vaccinate children who are at high risk of contracting the disease.  I said that whilst Freya wasn’t at higher risk of contracting chicken pox, the potential consequences of her contracting the disease whilst taking aspirin could be catastrophic.  He agreed to take the issue away, and on the 19th August 2015 I received a letter confirming that they believed it was “reasonable for Freya to receive vaccination against Chicken Pox, both in relation to the issue regarding ongoing treatment with aspirin and the small degree of risk of developing [RS] and also the small risks that Freya may require treatment with immunosuppression therapy in the future…”.   Freya had been weaned off steroid therapy a lot more quickly than originally planned when the gastrointestinal bleeding started. From memory, it was the 8th July 2015 when she took her last oral prednisolone; that meant she could have the live vaccines, including CP, anytime after the 8th October 2015; “…it is important that Freya does not receive this until at least 3 months following…the last day Freya received the steroid treatment…”.  I still felt uneasy, and decided to wait until our next follow-up appointment to discuss.  It was at that appointment that I shared all the research that I had done, and got a referral to Immunology.  I had to wait until yesterday for that appointment.

I wonder if now might be a good time to share what I have learned, from the internet (reliable sources, like the NHS and the American Heart Association) and from medical professionals from London to California…

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From the list above, all vaccines are inactive with the exception of the following live vaccines – Rotavirus, MMR, Children’s Flu vaccine (note that for the children’s flu vaccine, the nasal spray is live, however there is an injectable inactive flu virus available).

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These are just a few examples of the responses I received from medical professionals, and I can say that my internet research has thrown up much the same; anything from 3 months to 12 months.  Helpful, right!  My gut feeling was telling me I should err on the side of caution, and follow the advice of the US doctor who is considered the leading Kawasaki Specialist in the World – she calls herself a ‘Kawasakiologist’ and I believe she deserves the title.  Our GP agreed that Freya qualified for the injectable (inactive) flu vaccine.  My decision was made.  Well, kind of.  I had decided I wanted to get Freya caught up on the inactive vaccines immediately, then discuss the issue of the live ones with our Immunologist.  Chances were, by the time we got any decisions we would be nearing that 12 month mark anyway, so it was a win-win.  But our ever cautious GP decided that if we were speaking to an Immunologist anyway, there was no harm in waiting for that meeting before we started the immunisation process, and he felt happier to wait for clear direction from her.  So, again we would have to wait.

So yesterday we had that appointment with the Immunologist.  I was all geared up to go in and cover all my questions, but unfortunately an hour’s wait with a baby that has decided that a high pitched squeal is the best means of communication made the whole process a little trickier than I had anticipated!  The doctor was the Infectious Diseases Consultant who treated Freya when she arrived at the Children’s Hospital on day 8 of her illness.  That was nice, as I had the opportunity to thank her for her compassion, support and tireless determination to get to the root of Freya’s condition (especially as I was quite a difficult ‘customer’ who asked lots and lots of questions, and even accused them of breaking Freya’s heart at one point!)  She seemed genuinely pleased to see Freya looking so well.  She received the news that we had seen some improvement in her coronaries since the acute stage of the illness with a broad smile, and she was happy that Freya has not had anything more than one little cough and cold since her hospitalisation.  I expected her to call me a muppet for being a cautious and over-protective mother, but instead she said she felt I was doing the right things, which was reassuring.

I came away from the appointment with a solution, individualised for Freya.  I still don’t have a definitive answer about the timescales related to immunising after IVIG.  But then why would I?  The fact that I can quote at least 5 different timescales from medical papers and journals across the world tells me a lot of them are guessing. I’ve read that medics aren’t completely sure why IVIG even works in the case of KD – they are still trying to understand what causes the illness in the first place, so I guess it would be near impossible to understand why the treatment works. It just does (in most cases).  The Immunologist told me that they deal with children who have compromised immunity as a result of a bone marrow transplant, for example.  Those children are given immunisations  in line with the hospital guidelines and they do not wait 12 months.  That said, she agreed that they had learned more than they previously knew about KD from Freya.  Presenting at just 7 weeks old, and having had no previous immunisations, she is a bit of an unusual case.  So they have agreed to follow a similar process to that of a bone marrow transplant patient.

What are they going to do?

They have taken blood samples from Freya in order to test her body’s immunity status.  They will be testing Freya’s immunoglobulin levels, and lymphocytes (T-cells).  Depending on those results (and I am sorry, I didn’t ask what result they would be expecting or what a low or high result might indicate, or whether there was a chance they might just be reading ‘borrowed’ antibodies as a result of the circulating IVIG – I will ask that when we discuss results), they will start the routine inactive vaccines and the injectible (inactive) flu vaccine.  After a period of time following those (I think she said 6 weeks), Freya’s immunoglobulins will be tested again to check her immune response to those vaccines.  Assuming they get the right result (whatever that might be), they will then progress to live vaccines, including chicken pox.  If we get moving quickly, Freya may even make it in time to have the MMR vaccination at precisely the right time.  I have some decisions to make about Rotavirus (which I believe is time-specific so she may already be considered too late) and Meningitis B, as both have stated increased risks of contracting Kawasaki Disease in the patient information.  I know it is incredibly rare for KD to reoccur, but show me one parent of a kid with a rare condition who finds that word reassuring.

Yes, I am still confused as to what the right answer is about timescales for vaccinations post treatment Kawasaki Disease.  But, I think I have a great solution for me, for Freya.  Rather than guess based on the varied guidelines out there, we are going to take a look at Freya as an individual.  Actually take a look inside and see what is going on, and make the decisions based on what she tells us.  The Immunologist has always said that Freya showed them the path to a diagnosis, and that they learned so much from her.  Seems she is going to teach them something new.  And as much as I probably do their heads in with my questions and powerpoint presentations, I do know that they respect me for it and that they are luckily not too arrogant as to discount this mum’s research and opinions.  She actually said it was helpful and told Freya that she is as well as she is because of her “amazing mum”. I don’t know about that, but in a sea of negativity and low moments, I’ll take that right now.

Whatever I learn from this experience, I will share.  Every Kawasaki case is different, no matter how similar some of the stories might seem.  No wonder it is a tricky one to spot, diagnose, treat and understand.  I hope in my lifetime they find the cause so I can finally understand why this happened to us, to my little Peanut.

Our Rheumatologist said that the subject of immunisations in these cases is “contentious” and currently being debated.  Another said that “guidance is not clear as there are no trials/studies to guide us for this exact situation…” and “…is a balance involving unknowns…”  He gave his opinion and advice, stating that “…there are other equally ‘correct’ versions too!”  No shit!

I’ll leave you with a few of the comments that I received from KD specialists here and in the US, which might help to dispel a few myths relating to IVIG and immunity.

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And in case you can’t read that, I have pasted below:

“The reason not to give live vaccines after IVIG treatment (has nothing to do with steroids) is that your daughter has received antibodies poled from 10,000 adult blood donors who have antibodies against the viruses in the live vaccines. Therefore, the live viruses are inactivated by the circulating IVIG that is still detectable 11 months after administration…it is not dangerous to give the live vaccines…it’s just that they will be inactivated and the body will not make a lasting response. All killed vaccines are fine to give once your child is past the acute phase. 3 months sounds like a good period to wait. All live viruses vaccines should be delayed one year after IVIG.”

“We don’t usually stop aspirin when we give chicken pox vaccine for our [patients] with serious aneurysms. The risk of Reyes’ Syndrome was associated with higher doses of aspirin and not the very low dose used for the anti-platelet effect in KD patients with aneurysms. There is no data to support the notion that low dose aspirin is a risk. That being said, Reyes’ Syndrome [is] terrible and it should be easy to stop aspirin for 2 weeks. Clopidogrel can be substituted for aspirin during that time.”

“Your daughter’s immunity is not compromised by KD. It can be compromised by steroids, but only while actually taking the steroids. Your daughter’s immunity has been boosted by the IVIG she received so she is quite protected from all routine infections for the next year. There is no evidence that children with KD have immune defects that make them more susceptible to routine infectious agents.”

“…The issue of when to vaccinate children who have received…IVIG…arises because the antibodies present in the IVIG may prevent an adequate response to live vaccines. This is less clear in the case of vaccines that do not contain live organisms. The second issue is that steroids may diminish immune response and also make live vaccines dangerous. If Freya has been off steroids for 3 months she can go ahead with all the killed vaccines…”

“…The IVIG may prevent live vaccines working for over 6 months, and may interfere with MMR vaccine working. However MMR is not needed until after 11 months of age so unless there is a local measles outbreak she does not need MMR until the normal age…”

“Rotavirus vaccine is supposed to be given before 24 weeks of age which Freya may be beyond; it is probably not worth giving it at this stage…”

“…Varicella vaccine [chicken pox] should be given but as both steroids and IVIG may prevent it working I would suggest waiting at least 6 months from the IVIG and steroids before giving it…”

 

 

The Maternity Thief

Posted on by Bluemama

Today Freya is 9 months old.  9 months old.  I can’t even compute that.  It means that we are 7 months post-diagnosis, and yet it seems like only yesterday that we were taking our baby girl to A&E with a high temp and a low appetite, completely unaware that from that day on our lives would change forever.  I had my precious baby girl at home with me for 7 weeks before that fateful day.  Just 7 weeks; it was no time at all.  Then Kawasaki Disease stole into our lives, and stole away my maternity leave.

I have previously shared Freya’s journey, our journey, with her illness through a number of blogs, taken from a journal that I wrote during our 6 weeks in the hospital from 31st May to 9th July 2015. Before she became ill, I had spent most of those early weeks resting, making the most of being a mature mum who had no desire to rush into doing anything too much at all.  I was going to allow myself to enjoy this one, and the housework could wait.  So almost all of those 7 weeks, give or take a few visits from friends and relatives here and there, were spent cuddled up on the sofa with my little ‘Peanut’, and I watched movies or slept to recharge my batteries after what had been a pretty tiring delivery.  On the 30th May 2015, when my parents came to visit, we went for a day out to Cannon Hall Farm, a local attraction where my older children could feed the animals, and blow away some cobwebs with some fresh Summer air.  I was content, no, more than that, I was happy beyond what I could ever have imagined when I found myself unexpectedly pregnant again at 40.

The following day, Freya awoke as normal, but instead of guzzling down that first bottle of the day she laboured through it with a stuffed up nose, and after what seemed like an age of feeding she’d managed about an ounce of formula (I had stopped breastfeeding the week before).  Sure, I thought it was strange, but not being a particularly over-anxious parent I put it down to her snuffly nose, and decided to keep an eye on her.  She didn’t take the next feed either; I guess that was around 9am, and whilst my concern was peaked, I didn’t make any rash judgements about the situation.  She was sleepy, but what 7-week old baby isn’t?  That’s all they do! Feed and sleep, sleep and feed.  Except at that moment, Freya wasn’t too fussed about the feeding part.  I would say it was around 11:30 or 12 when I decided that I couldn’t let her sleep any longer without trying to get some milk in her, so I made up a bottle and went to rouse her from the bouncy chair she was sleeping in.  She looked warm, and was hot to the touch, so I fetched the digital ear thermometer and took her temperature.  38.3ºC.  She had a fever.

Again, this didn’t panic me particularly, and I sent my husband to the local Mothercare store to buy a medicine dispensing dummy (I’d had one with my son, and it is a great way to get medicine into a tiny baby).  While he was gone, I fished out the Calpol (paracetamol) and began to read the label for the right dosage.  “From 2 months” read the label.  Hmmm, should I give it to her?  Was it safe?  She was only a week off 2 months, and surely they were over-cautious with these things? But I couldn’t risk it – she was too precious, and I would never have forgiven myself if anything had gone wrong.  Both my mother and mother-in-law were home with me, and both agreed that if I was concerned, I shouldn’t mess about.  I should take her to A&E (the ER, for my American readers) – it was a Sunday, you see, so our GP surgery was closed (a factor in our KD journey that later I would be grateful for).  I opted to call the out of hours surgery number, and after explaining that Freya had a snuffly nose, high temp and no appetite, and that her breathing was becoming quite laboured (her tummy was moving up and down, as opposed to her chest), they commented that it was unusual for a baby as young as Freya to have a fever and directed us to take her to the local hospital right away.

The rest, as they say, is history.  But I often get asked about Freya’s journey, how we knew, what her symptoms were, so I thought it would be useful to document our experience with KD in 2015.

Week 1 (31st May to 6th June 2015)

  • Visit to local hospital A&E with low appetite, high temperature and laboured breathing.  Lethargy was not noted, as she was a tiny baby who was naturally sleeping a lot.
  • Transferred to Children’s Observation Unit for observation.  Immediate concern was Group B Strep as I had tested positive during the pregnancy.
  • Admitted to Children’s Ward for overnight observation and placed on IV antibiotics as a precaution (standard procedure for suspected meningitis, which can develop in babies who have contracted GBS from the mother).
  • Following morning around 5am, Freya develops a rash on her torso, which quickly spreads to her limbs.  Doctor is called who states that Freya’s body is shutting down and she is wheeled to the High Dependency Unit (HDU).
  • Freya is treated with a number of fluid boluses (“a rapid infusion of intravenous fluid or medication that is usually administered to correct a life-threatening condition”, Wisegeek.org).  I don’t know what they put into her body, I just know that they acted like her life depended on it, and I looked on, heartbroken and in shock.  I was alone; I called my husband and told him I thought he should come to the hospital.
  • Remains in HDU for 3 days.  IV antibiotics (Amoxycillin and Cefotaxime) and fluid are administered via cannula sites, as well as regular antipyretics (paracetamol and ibuprofen).  Due to the size of the tiny veins, the cannula are unstable and new sites have to be found daily, sometimes more often.  Monitors attached by wires to Freya’s body show a very high heart rate, and low oxygen levels.  Temperatures continue to spike despite medication to bring them down.
  • Condition stabilises, and Freya is moved back to the Children’s Ward.  Feeding is via an NG tube up her nose, and she has cannulae in her wrists and ankles.  Eventually a cannula is inserted in her head as the other sites fail.  Blood tests and throat swabs are not conclusive and do not test positively for any standard illnesses.  Continue to suspect GBS and/or bacterial meningitis.  CRP reaches over 300.  3rd antibiotic is introduced (Gentamicin).  Lumbar puncture is needed to diagnose meningitis, but Freya is too sick to undergo the procedure.
  • Day 5, nurse confirms nasal swabs test positive for Rhinovirus (the common cold).  One consultant states that Rhinovirus could make a tiny baby very sick. Another says “Rhinovirus does not do this to a  child”. Chest x-rays and cranial ultrasound are clear.
  • Day 6, Freya undergoes lumbar puncture.  Results show raised white blood cells, but not high enough to indicate bacterial meningitis.  However, Freya has been on 3 antibiotics for 6 days and it is considered that the condition may already have been fought off
  • Day 7, we are told that on a scale of 1-10, with 11 being dead, Freya is a 10.

Week 2 (7th to 13th June 2015)

  • Day 8, consultant (one we haven’t seen before) says that he is not happy that a diagnosis has not been reached and that if it was his child he would expect answers. Advises he has arranged transfer to a nearby Children’s Hospital where they had access to more resources, including the ability to carry out an echocardiogram (heart scan).  Freya has her first ride in an ambulance. That evening I point out Freya’s swollen feet to the on-duty Consultant. He requests an x-ray on her chest, head and stomach, and asks for her foot to be x-rayed for suspected injury at the cannula site (I believe this was pre-peel swelling and a symptom of KD).
  • Day 9, chest, head, stomach and foot x-rays are all clear.  Echocardiogram shows a slight murmur, but is clear otherwise.  Advised a murmur is not unusual in a newborn baby and usually resolves as the heart develops.
  • Immunology and Infectious Diseases run various tests on daily blood samples.  Antibiotics are replaced with Meropenem due to differences in hospital protocols.  Acyclovir is also introduced (known for treatment of the herpes virus).
  • Day 10, low haemoglobin levels result in Freya needing a blood transfusion.
  • Day 11, MRI scan is undertaken to look for clusters in the brain that would indicate GBS infection.  Freya is still so sick, she sleeps through the MRI scan and does not require a general anaesthetic.  MRI results are clear.
  • Day 12, Freya is placed under general anaesthetic in theatre, and undergoes a bone marrow aspiration to test her cells for Leukaemia. Tests are negative.  Two further lumbar punctures are undertaken, but unable to collect any spinal fluid.  Prolific rash appears on Freya’s arms and legs.  Immunology Consultant requests Rheumatology opinion.  Rheumatologist believes it is likely to be an infection, but requests a follow up echocardiogram and further blood tests.
  • Day 13, sent for follow up echo, Sonographer says that he is looking specifically for signs of Kawasaki Disease.  This is the first time I had heard those words.  Sonographer apologises for putting his foot in it.  Rheumatologist arrives to inform us that they have reached a diagnosis.  Freya has Kawasaki Disease, and her coronary arteries are dilated.  She requires immediate treatment of Intravenous Immunoglobulin, a blood product containing antibodies from thousands of donors.  It is administered intravenously over 12 hours.  Great Ormond Street and  Newcastle Children’s Hospital are consulted and Freya is given methylprednisolone (high dose IV steroids) and aspirin (20mg).  Seen by Ophthalmology to look for any issues with her eyes, nothing of note identified.  All antibiotics are stopped.  Contact made with Cardiologist at Leeds General Infirmary who says he is “not excited” by the coronary dilation.
  • Day 14, Freya receives the second half of her IVIG infusion (due to her size she had to have the dose over 2 days). Echo shows no change from previous day.

Week 3 (14th to 20th June 2015)

  • Day 15, follow up echo shows still no change from previous two days.  CRP remains elevated.  Rash has gone completely, and temperature spikes have reduced in frequency.
  • Day 16, further echo shows significant increase in coronary artery dilation.  The word aneurysm is mentioned.  All three coronary arteries (left, right and left anterior descending) are dilated to over 5 times the normal diameter for a baby of her age. A second dose of IVIG is required.  Contact made with Leeds Cardiology who insist that Freya is transferred to their Cardiac Unit. IV steroids stopped, and oral steroids are prescribed.
  • Day 17, second half of second IVIG dose is administered and Freya is transferred to Leeds.  Echo is carried out by Cardiologist who concurs with Sheffield’s findings and identifies a leaking aortic valve.  Freya is admitted to the Cardiac HDU.  Leeds Rheumatologist discusses possibility of administering a drug called Infliximab as they believe the inflammation is still ongoing.
  • Daily echo’s show no improvement, but no worsening either.  Request made to NHS England to give Freya Infliximab, not widely used in the treatment of KD, and not permitted for use in babies under 3 months (at that hospital at least).  Funding agreed based on Freya’s case; “a rare and severe presentation” of “persistently active Kawasaki Disease” (letter from NHS England granting funding).  Warned of the risks; Infliximab switches off TNF-alpha, the protein that helps the immune system to fight cancer (although it should be noted that this has been found in patients receiving the medication over prolonged periods, and no evidence has yet been found of malignancy following a single dose).  Cardiologist explains the risks associated with Freya’s condition; stenosis (narrowing of the arteries), clotting (causing potential heart attack) or rupture (unpreventable without cure).
  • Day 19, Infliximab infusion is given with no adverse reaction.  Freya is transferred back to Sheffield the following day

Weeks 4-6 (21st June to 8th July 2015)

  • Begin weaning steroid dose with a view to ceasing after 3 weeks.
  • Bloodwork shows improvements.  No temperatures or rashes.  CRP dropping to near-normal levels (13 on  Day 21).
  • Day 26, ambulance transfer to Leeds for cardiology follow-up.  No change. Advised unlikely to see any improvement for at least a year.
  • Allowed home for day release, days 28 and 29.  Discharged on Day 30 with instruction to return for bloodwork in one week.
  • Day 31, Freya’s nappies show blood in her stools.  Return to Sheffield Children’s Hospital with gastrointestinal bleeding.  Re-admitted to the ward.  Gastroenterologist wants to stop aspirin, Cardiology refuse.  Administered IV lansoprazole.  Great Ormond Street confirm there can be a small window to cease the aspirin if necessary.  Freya’s formula is switched to Neocate, a mild non-cow’s milk protein formula. Bleeding stops within 24 hours.  Ultrasound shows abnormalities in the arteries in Freya’s bowel.  Barium swallow test shows normal function.  Diagnosis: cow’s milk protein allergy exacerbated by KD inflammation and medication.  Steroids weaned at faster pace than originally planned.
  • Day 37, follow up Cardiology appointment in Leeds shows a reduction in the dilation of the coronary arteries (our “Wow!” moment) and the leaking valve has corrected itself.
  • Day 38, Freya is well, but kept in as a precaution.  Lips are still cracked and sore, bleeding when she cries.  Finally discharged on Day 39 after Barium Swallow test returns a normal result.  All bloodwork within normal levels, with the exception of ESR which remains slightly elevated.

Since then…..

13th July – follow up Rheumatology appointment (Sheffield) shows ESR remains elevated, but declining.  Cardiology follow up (Leeds) shows no change from previous echo. Aspirin dose is increased based on Freya’s weight gain (standard anti-platelet dose in KD patients is 5mg per kilo).

6th August – Day 68, follow up Cardiology appointment shows further reduction in the dilation of the coronaries, with the right coronary artery (RCA) normalised, and the LCA reduced to 3mm (still large for a baby, but not considered as severe).

10th August – Rheumatology Follow-up (Sheffield) – happy with progress,  all bloodwork has returned to normal ranges

13th August – Ophthalmology Follow-up (Sheffield) – discharged

3rd September – Gastroenterology Follow-up (Sheffield) – happy with progress

7th September – Cardiology Follow-Up (Leeds) – no change.  Care transferred to Doncaster.

16th October – Gastroenterology Follow-up (Sheffield) – happy with progress

4th November – Cardiology Follow-up (Doncaster).  No change.  Request transfer back to Leeds due to poor experience.

11th November – Gastroenterology Follow-up (Sheffield) – happy with progress

And there it is.  The last 9 months of my life on maternity leave.  Writing it down like this has highlighted to me why I feel so exhausted, and so cheated of the year I had planned to take off with my new daughter.  As I type, tears have begun to run down my cheeks.  I think that’s what upsets me the most.  The unfairness of it all.  When I gave birth to Freya, when she was finally here, I decided it was time to banish all that negativity and really live life.  I was going to enjoy every second of my maternity leave with her.  This was a chance I wouldn’t get again.  I imagined picnics in parks in the Summer sunshine; instead I watched other mums with their babies through a hospital window.  I imagined meeting new people as I introduced my baby to new experiences; instead I kept her away from other children because of a repressed immune system, and later not being able to immunise or protect against the potentially fatal consequences of illnesses like the flu or chicken pox.  

Don’t get me wrong, I have made some wonderful memories along the way, and in between the hospital stays and medical appointments, the calendar is peppered with visits to the Brontë Parsonage Museum, and Manchester’s Christmas Markets.  But where there are blanks on the calendar, there have been numerous phone calls battling the prescription of Freya’s aspirin, countless hours of research, letters to MPs…the list goes on.  The fact is that Kawasaki Disease stole my daughter’s health, took away my happiness, challenged my beliefs as parent and protector, and robbed me of my maternity leave.

Things are starting to settle down in 2016.  We are waiting for Freya’s next cardiology appointment where we can only hope for good news.  A blessing to stop researching for answers I will never find came in the form of e-mail responses from two cardiology professors, and specialists in Kawasaki Disease, and I feel a sense of relief from that.  Freya has an appointment with Immunology at the end of this month where I hope to get some closure on the immunisation issue and develop a plan to catch up on the vaccinations that Freya missed, plus those that might save her from a worse fate (rare or not!).  Perhaps we might even be able to take a holiday when we know she is less likely to pick anything nasty up on an airplane.  In March we see the Dieticians at Sheffield Children’s Hospital to discuss the introduction of dairy into Freya’s diet once she reaches one year old.  And following that, if there are no adverse reactions to cow’s milk in her diet, we should have our final Gastroenterology appointment.  I am not sure how long we will continue to see Rheumatology, but they mentioned 2 years at one point, so I guess we will wait and see.  That will leave us with Cardiology, which is likely to feature in Freya’s life for the foreseeable future.  They said “for life”.

I have 3 months left with my beautiful daughter, before my maternity leave comes to an end.  Instead of being a time of transition into the parental role, it has been a rollercoaster that I have wanted to get off from the first day Freya showed signs of illness.  I have enjoyed many precious moments, overshadowed by sadness and fear.  But I have known true love, and I have fought with every inch of me to keep my daughter safe.  I cannot imagine a life without her in it, and because she is here I have to be grateful, even if the past year has been hateful.  I cannot even start to think about leaving her in April.  Seems the challenges for me are not over yet.

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I wish I could turn the clock back to these days, cuddling on the sofa without a care in the world

Goodbye 2015

Posted on by Bluemama

My New Year post is a little behind schedule this year, but it has been a busy couple of weeks, with a trip to London, Christmas, a wedding and New Year crammed into a short space of time.  And not only that, but 2015 was a pretty damned big year for me; one that required appropriate reflection.

Towards the end of 2014 I had begun to feel comfortable in my own skin for the first time in a long time, if ever before.  I had battled for the latter half of the year with a lot of negative thoughts and feelings towards an unplanned pregnancy that was going to ruin my fun, my career, my life.  But just before Christmas of that year, I had reunited with some old school friends who, coupled with some professional counselling, helped me to reach an understanding with my past, appreciate my present, and look forward to the future.  My life wasn’t over, it had just been thrown a pretty big curveball, and it was something we could learn to live with, perhaps even to enjoy.  Before my catharsis, I had believed myself an unlucky person.  Of course I realise now that it wasn’t really the truth, and that my old friend ‘Ant’ was dominant at the time and had stolen every ounce of reality I had.  She was determined to make me wallow in the darkness of this life that I hadn’t counted on, but I broke her spirit and ended 2014 triumphant.

On the 29th December 2014 I posted a blog titled ‘Metamorphosis’, which was the first blog that I publicly shared on Social Media, no longer concerned about hiding behind the mask of ‘Bluemama’;

“…2015 is a year of new beginnings for me in more ways than one.  It is the year my family will be complete, and the year that I will allow myself to feel truly complete.  No longer half a person living half a life, missing perfect moments whilst over-analysing the past.  These past few months have shown me a glimpse of the joy that can be felt through living this precious life in the present…”

I believed every word, but I wasn’t ‘cured’. Lord knows how many of my 40 years had been dedicated to the creation of a negative force in my mind that forced me into catastrophic thinking and general negheadedness (that’s my word).  Yes I felt more positive about my future, and I had come to terms with the massive change that was about to happen in my life, but I was troubled by worries about the birth, worries that were more exaggerated than the ‘normal’ pregnancy and birth concerns.  I was convinced that my baby would die, and when I was diagnosed Group B Strep positive during the latter weeks of the pregnancy, I believed I had found the killer.

I worked pretty much up to the wire, in a full time job that had only recently been created and I had a lot to do before I could walk away with comfort.  I had a team to recruit, as well as my replacement, and I had big projects that needed to be finished in my absence.  Needless to say I didn’t get much time to ‘wind down’ and as I was booked in to be induced on the due date because of maternal age, I didn’t get much of a chance to prepare for the next stage either.  My maternity leave commenced on the 5th April 2015.  I was induced on the 8th April.  And Freya Ellis Belle McBride was born happy and healthy on the 10th April.  I will never forget the joy that I felt when she finally entered this world, and stole her place in my heart.  To me her arrival was like a shining beacon in the darkness, telling me how silly I had been to fear the worst, and how many hours I had wasted on negativity and unfounded worry.  She was here, she was beautiful, and she was my reason to be positive about the future.

“…She was brought into my life to teach me some lessons, but most of all she was sent to me to show me that you really can dare to dream…” (Welcome to the World, 15th April 2015, Bluemama)

“…One of the first lessons I have learned is to embrace the gifts we are given and to dare to dream that sometimes good things do actually happen…” (No time for blogging, 20th April 2015, Bluemama)

“…Every now and again a tiny little voice starts to whisper concerns about something happening to my precious little girl, but I have some allies up there in that mind of mine swatting those thoughts away like pesky midges.  I think right now the worst that could happen…is that I could kill her with love…” (Obsession, 23rd April 2015, Bluemama)

On May 7th, I wrote a tiny blog titled ‘Cleansing the soul’.  I truly felt that the birth of Freya had healed a troubled heart and mind, and that I might look forward to a life of hope and dreams, no longer thinking the worst.  On May 20th I blogged again, sharing a poem that I had written for my son named ‘True Love’ which summed up the strength of the feelings that I had for Freya as well as it had for him.  It would be the last blog I would write for a while, and 11 days later hell opened its doors to us and stole my perfect, normal, happy life away from me.

The 31st May 2015 was when Freya’s Story ‘began’.  I shared my first blog about those missing weeks on the 19th July.  You can find those blogs if you wish to be acquainted with the full account of what took place between the 31st May and the 19th July.  For the sake of brevity here, understand that on the 31st May, at just 7 weeks old, Freya became seriously ill and was admitted to our local hospital Children’s Ward where, after going into septic shock she was treated with suspected bacterial meningitis.  After 8 days of watching our baby get more and more sick, she was transferred to a nearby specialist Children’s Hospital where after days of various tests, including MRI scans and a bone marrow aspiration under general anaesthetic, and requiring a blood transfusion, Freya was finally diagnosed with Atypical Kawasaki Disease.  On the 12th June 2015 we were told that our daughter’s heart was broken, and on the 12th June 2015 my heart broke too.

Freya recovered from the illness and was finally discharged, with a requirement to return for frequent follow up with Cardiology, Rheumatology and Gastroenterology (due to the widespread effects of Kawasaki Disease on a child’s body, a number of medical disciplines are involved).  Her heart quickly showed signs of improvement, although improvement has reached a standstill for the time-being, and we await her next cardiology follow up in the coming weeks, where we can hope for further improvement, but expect no change.  She continues to take a daily dose of aspirin to prevent her blood from clotting within the dilated arteries; medication she is likely to require for the rest of her life.

There has been a lot to be thankful for since the horror of the Summer.  Freya is a remarkable little girl.  She complains about very little, cutting teeth without so much as a whimper.  She is happy and content, inquisitive and cheeky all in one.  She is just like any other baby on the outside, and whilst we know that she has a broken heart on the inside, you wouldn’t know it and it has (so far) had no impact on her little life.  I started ‘Freya’s Story’ as part of my blog and set up a page on Facebook (www.facebook.com/freyasstory) so that I could raise awareness, share information and Freya’s progress, as well as supporting other parents who might be going through the same thing with their child.  Ok, so it hardly went viral, but I have just under 700 followers, and that is 700 more people than might have previously heard of Kawasaki Disease, and the feedback I have received from parents all over the world has been humbling.

This year has taught me many things.  I gave Freya life, and she taught me the meaning of it.  My belief system has been annihilated and I fear death around every corner.  Kawasaki Disease showed up and slapped me right round my smug new mummy face.  Of course I knew that none of us is bullet-proof, but the realisation of just how precious this life is was one that has been hard to come to terms with.  You always think this kind of stuff happens to other people, don’t you.  Every day in this life is bitter-sweet.  Joy is guarded by sorrow, love over-shadowed by fear. You know those moments when you think about the future, small insignificant things that pop into your mind every now and again, like “I wonder whether her hair will be straight or curly..?”, or “I can’t wait to see her running around…” Imagine if every time you looked to the future you had something digging you in the ribs to remind you that you don’t know what that future holds, warning you not to become too complacent or to tempt fate.  That is what this life is like.  I don’t know what is around the corner for Freya, and no matter how hard I try to be positive and weigh up the probability of anything going wrong at all, the sun is never quite strong enough to break through the little cloud of sorrow that lingers.  But maybe that cloud is a good thing?  A reminder not to take anything for granted. None of us is promised a tomorrow, so if there’s something we want to say or do, we should do it now – you will only ever regret those things you don’t do.

Needless to say, this Christmas was an important one for us as a family, perhaps me more than the rest of us.  Freya’s first Christmas was one way of making wonderful memories that would absolutely ensure that 2015 was ended on a positive note.  And New Year’s Eve was my opportunity to stick two fingers up at Kawasaki Disease, turn my back on 2015 and take a step into a new year and a new chapter in our lives.

I have learned who really matters to me through this last year, and I will make sure that I continue to appreciate those people for years to come.  I have met people that I would never have come across had it not been for Freya’s illness, and have opened my heart to strangers who have quite literally saved my life (you know who you are, Kawasister).  I have won some small battles with medical professionals, and secured some contacts that resulted in a Virgin Fundraising link being set up to gather funds for Kawasaki Disease research through the links between Imperial College London and Rady’s Children’s Hospital, California.  I have many ideas and hopes for 2016, centred around giving back and turning the experiences of last year into something good, but I am not going to share those until they are more concrete and I can ensure that I will not dismiss the ideas on a whim; I don’t want to disappoint anyone by making promises I may not keep, most of all I don’t want to disappoint myself.

…….

Freya just woke up, she is still awake.  This is an unusual situation for us as she is usually fast asleep by 6pm and we don’t hear a peep from her until the morning.  Holding her in my arms just a moment ago reinforced for me the feeling of living in this moment.  I couldn’t feel angry or annoyed at her for waking, I don’t think I could feel angry or annoyed at her for anything!  I hope that one day I can tell her that I love her without tears being hot on the heels of those three little words.  And I hope that I never forget that whilst tomorrow might be stolen from any one of us, nothing can take away yesterday, or this moment.  

…….

My hopes for 2016 are that we get closure on some of the outstanding issues with Freya’s health.  I would like to obtain clarity around the issue of routine immunisations, and hopefully get caught up with those that she missed (all of them!).  I would specifically like to protect Freya from chicken pox so that I might be less concerned about her mixing with other children socially.  I do so wish to see her interact with her peers like a normal baby should.

I want to exorcise the Kawademons that still haunt me with flashbacks and intrusive memories, and eagerly await the start of treatment for that in the coming months.

I want to fulfil my promise to donate blood to give back for the blood and blood products that Freya received, ultimately saving her life.  And I want to give back in other ways too, but I’m going to keep quiet about those for a little while 😉

I want to continue to make memories with those special people in my life. I would particularly like to be able to take a family holiday this year, as we weren’t able to go last year, and the immunisation issue has prevented us from flying.  I want normal for me and my family.

This year has to be better than the last.  It has to be.  I mean, 2015 wasn’t all bad; it brought us Freya.  But let’s face it, it was shitter than shit for the most part.  Let life throw at us what it will, I no longer heed that threatening cloud. It can hover above my head and threaten rain wherever it chooses, but I am no fair-weather girl, and a bit of rain never stopped me from smiling.  What’s that saying I keep seeing on Facebook? “Life isn’t about waiting for the storm to pass, it’s about learning to dance in the rain.”   

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