A moment in time…

Time…the indefinite continued progress of existence and events in the past, present, and future regarded as a whole:

A point of time as measured in hours and minutes past midnight or noon:

…And then there was nothing but time…empty time, with no measure at all…Just Mummy, Daddy and Harry.

We took it in turns to cradle our baby boy. Cuddling him, kissing him, talking to him. We were in a place that no parent ever wants to find themselves. What do you do? How can you take in the enormity of this moment? You desperately search for a way back…just to that morning would do, just enough time to go back and change the course of the day, to change the outcome of that one moment. But, no… Fucking no. There is no way back in time. We were stuck with time ticking on, knowing that we would have to say goodby to our beautiful baby boy. Leave him in this cold, sterile, bloody hospital and walk out of here with empty arms and shattered hearts. I desperately wanted time to stop, just stop…so we didn’t have to move forward, didn’t have to stand up and leave him on his own. He looked so tiny lying on that hospital bed. I remember some of the smallest details, but I can’t remember anybody’s names or faces, I couldn’t tell you what the paramedics looked like at all. No idea. But, I can still see the laminated butterfly they put up on the curtains… just to let everyone know a child had died. Our child…I will never forget that small detail.

We were then suddenly faced with the reality of what would happen next. The phone calls that had to be made. The nurse called my Mum, but I can’t remember what was said. I do often think of my Mum picking up the phone and being told her Grandson had just died. I often think of the long 6 hour journey my Mum, Dad and sister had that night to drive from North Yorkshire to Guildford. Horrendous for them, such a long way to come, they must have felt so far away from us. Apparently, I called one of my best friends, Claire, but I have no recollection of making that call at all. The shock…just wipes your memory, like certain things just didn’t happen. But, I do remember Claire walking into the cubical in A&E and being with us. She was just incredible and so brave to be able to get us through those next few hours of time. We were then told that the police were here…What? I hadn’t even considered that would happen. We had just watched our little boy fight for his life, doctors fighting for him and us screaming silently inside, willing him to come back to us… and now we were being told that the police, social worker and coroner were here to see us. I had to go through the whole account of what had happened that week, that day, the moment I found Harry. All of it. They were very kind and as compassionate as they could be, but all I wanted to do was be with Harry. The sharpness and gravity of what we were facing was starting to hit…I was so cold, so very cold and shaking. I didn’t know what to do, I didn’t even want to move my body through the air. I was motionless and just stuck…what the hell do we do now? Why has this happened to Harry, to us….to Brooke?

So, then our home became a crime scene, we couldn’t go home. Not that we wanted to. How were we ever supposed to step back through that front door? We were stuck in that little relatives ‘shoebox’ of a room. Not knowing what to do, where to go or how to even contemplate leaving the hospital.

Family started to arrive, I remember parts of them being there, but not a lot. I do remember getting up and going to the toilet a lot though. Don’t know why, just something I kept doing. Maybe I was trying to see Harry again, I don’t know. But, it was odd, now I think about it. It was almost robotic.

Then the time came for us to leave. We had to leave that ‘shoebox’ of a room. But, it was our safe room and leaving that room was terrifying…knowing we had to walk out of the exit doors and leave without our baby boy.

I made it to the exit…I made it through the big double glass sliding doors…but then the cold air hit me and I just collapsed on the pavement, hanging onto a bicycle rack. I didn’t want to leave. I felt like I was deserting my baby. How could I physically leave my baby boy here? My Dad helped me up and virtually carried me to the car. Strange, but I remember he was parked in bay 17, because I had to walk past bay 19…Harry’s birthday. I can’t remember what I gave them for breakfast that day or calling Claire, but I do remember the car park bay that my Dad parked in?

There is so much to talk about, to write about and share with you. What happened that night, the next morning, the one after that and how we have moved through time… but for now I will skip ahead, because I know that many of you are anxious to hear what happened last week at St Georges hospital and I have had so many messages to see if we are OK. (Thank you.)

Where to begin? It’s been a rollercoaster of information, false hope, anomalies, emotions and unanswered questions…that then create more questions. We are on a journey no parent wants to participate in, but for us we have no choice. We just have to be brave and roll with the waves… as best as we can.

Firstly, many months ago now, there were anomalies found in Harrys chromosome 10, a deletion or mutation in part of that chromosome. So you can image what I did next…yep, GOOGLE. My god, google can be your best friend and your worst enemy. Especially for someone like me…who needs to know the ins and outs of a gnats arse! I can’t help it, I have to read and read….and read some more…sending myself loopy and around in circles. I came up with all sorts of answers, none of them correct, but I still read! The chromosome 10 was all to do with Harry’s eczema and allergies, but nothing to do with why he died. So that was a red herring and steered us down the wrong route…however, it did lead us to a specialist in genetics and cardiology, specifically in sudden death cases. I believe we may have never met her, if the chromosome 10 anomaly wasn’t found.

She told us that she had read Harry’s post mortem report and that there was not enough evidence to support the pathology findings of (pneumonia) – that was (pneumonia in brackets, by the way.) He had a cold….a bloody common COLD. I told the doctors that, I said we had all been battling with colds and viruses for weeks. What family with two little ones isn’t? She said she believed that it was Harry’s heart. He had been playing that morning, bringing me books, eating hula hoops and just being a monkey! Yes, he was a bit of a whinge and under the weather…a typical toddler with a cold, wanting more cuddles and not much of an appetite for his teacake. Nothing to ring alarm bells at all. The specialist was lovely, very matter of fact, but compassionate. She virtually shouted at us to stop looking for answers that we couldn’t find. We were not to blame, we could never of known. We do hear this…it does go in our heads…but in our hearts, we still look for the
‘if only’s and what if’s… Maybe one day we will find some peace with this. I hope so, it’s an agonising way to live.

Harry’s post mortem was 19 pages long. Neither of us could read it for a few months…how can you read something like that about your own baby? But, the doctors did and have all pushed back on the cause of death being – respiratory tract infection. Yes, he had RSV and other common viruses, but no sepsis and no overwhelming infection. It was a virus….a common cold. So now you know why I hate the word VIRUS. Hate it. Eventually I did find the courage to read Harry’s report. I just had to detach myself from what I was reading, but I had to do it. I had to know for myself what had been found. Not sure how any parent un-reads a report like that…it kind of etches into your mind. And…yes, you guessed it…I headed straight for GOOGLE! (Bloody google and I…we really should part company.)

We were then referred as a family to St George’s hospital for SADS screening (Sudden Arrhythmia Death Syndrome.) The three of us had many tests, including a holter heart monitor each, that we wore for 24hrs. Brooke was fantastic (as usual!) we told her we were all robot agents on a secret mission! She was happy with that!

We finally went back last week for the results. The results of Harrys molecular DNA blood tests were; They haven’t found anything obvious, but that they have found something in a DNA strand of code, associated to the genes in the heart, specifically the thickening of the walls of the heart. We have been told that this may mean nothing, but could be something…so Lee and I have had to give blood for DNA genetic testing, to see if we have the same as Harry or that, this was a spontaneous mutation that happened at conception or shortly after. Meaning we could never of known. I hope I’ve explained that OK, it was hard to understand ourselves. We are waiting for it all to be written up in a letter.

Does this make it easier or harder to accept? Not sure…at this stage, I am just relieved that Brooke is OK and that we haven’t hit a brick wall. The Professor that spoke to us (as a professional and a as a Father) said they will do everything they can, to try and get us an answer. He also reassured us that he doesn’t see enough evidence in the PM, that Harry died because of a respiratory infection – a cold.

As for Lee and I, no abnormalities came back for me (not physically anyway! Mentally…I’m sure that would be a whole new ball game!) But for Lee, they have found that one side of his heart is very slightly larger and that he kicks out a few extra beats. We are trying not to worry about this too much, but obviously it is another concern and could provide more answers in the future…(or more questions, as the case seems to be with us.) We are waiting for a cardiology MRI scan now and results from our DNA tests.

Nearly there…

We also signed a form to allow us to participate in a research study, to use all our DNA to help find and discover more answers in the future about SUDC and SADS. Of course we signed instantly. If Harry’s life could potentially help the medical world and save future lives…Then YES, bloody YES…of course we signed. 

“And finally; To our darling baby boy Harry. We are trying Harry BoBo, we really are trying. Trying so hard to find out what happened to you. We will always fight for our children, we will always be your Mummy and Daddy. This is one way we can carry on being your parents and actually do something more for you. We will fight for answers, even if that does bring up more questions…we will #keepgoing Harry.
We can promise you that.”

Love Mummy. xxxxxxx

23 thoughts on “A moment in time…

  1. Oh heck Claire. I’ve just read your words – well as best as I could between wiping my eyes. You have such a way with words and explanations. You are all constantly in my thoughts and my heart. I really don’t know where you get the strength from – perhaps I do, her name is Brooke. Lots of love to you all xxxx

    Liked by 1 person

  2. You’re right, we felt a million miles away from you, the longest most sickening drive I’ve ever done, just needed to get to you both! I’ll never forget walking into your shoebox little room, never x

    But you have kept going, and you’re getting stronger with ‘time’. Love you all xx

    Liked by 1 person

  3. You should be a writer Claire. You explain it so well I almost feel like I’m there with you 😔 I can’t begin to imagine the terrible pain you are all going through, to be a good mother when your heart is breaking must be the hardest thing in the world. I think about you all the time, love you guys 💔

    Liked by 1 person

  4. Thank you for sharing this. Lots of love to you all. Although it’s hard for you to write as Barbara said you just have such a eloquent way with words. I hope it helps you to sort out your thoughts as well as helping us to begin to try and understand what you went through and are still going through day by day. I’m always thinking of you all. You are such a brave family. Xxxxx

    Liked by 1 person

    1. At the time of starting to write, I get quite worked up and upset, but by the time I’ve finished a blog post…I feel a sense of relief (exhausted emotionally) but definitely a feeling of lightness. So writing must be helping me xx


  5. That phone call will never leave me… I just couldn’t take it in… I remember speaking to Lee..all I heard was ” My baby boy” I was in disbelieve.. telling the family was awful.. You are wonderful parents and you are doing everything you can to get answers for Harry.. Harry enriched your life’s.. and has passed on his smiles and strength to help you go forward… Mum xxxxxxx

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  6. you are very beautiful people, paul and i just send love and please keep doing this, so many people know and understand, stay true and write forever if you have too, were all hereXXXXXXXXXXXX

    Liked by 1 person

  7. You travel a road in life none of us would want to travel .None of us will ever forget the journey down, the little room , the walk away from the hospital, and most of all HARRY. Not sure you will ever get a definitive answer as to why .
    No Dad has an answer to give you but this Dad is so proud of you and so so sorry you are on this journey , just love you lots xxxx

    Liked by 1 person

  8. Beautiful words my darling wife Claire. I couldn’t of explained it anywhere near like you have ❤️ We WILL keep fighting for you Harry to find out what took you from us 💔

    Liked by 1 person

  9. It so sad Claire and Lee. You are inspirational in your sheer determination to get through this, for Brooke and for Harry. You wrote beautifully Claire. Lots of love to you all xx

    Liked by 1 person

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