Your 3rd birthday

William on his first birthday xx

William on his first birthday xx

When we found out that you were due on the 21st November we thought you might arrive on daddy’s birthday on the 24th, but you didn’t. You wanted to hang around and arrive on mummy’s birthday instead. You made your grand appearance on the 27th November at the same time your daddy was born at 12:21. I didn’t mind, I loved that we would share such a special day. Mummy has never been a person who really celebrates her birthday and when you came along I was more than happy for your to steal all the spotlight. Apart from the day you were born we only ever got to spend one birthday together, your first.

We celebrated your special day with our friends and family, you had a lovely farm animals birthday cake which you spat out, not having eaten any sweet foods before, but we enjoyed it anyway! You didn’t really understand what birthdays were all about yet. You were more interested in playing with the wrapping paper than you were the contents. Pretty standard stuff I think. On this special day daddy captured my favourite video of us together. As you sat with your presents you pushed them away, climbed into mummy’s lap and gave me a big birthday cuddle. I will never forget. I can close my eyes now and feel your little arms around mummy’s neck, the most precious jewels that will ever be around my neck. I can smell your sweet strawberry smell as you nuzzled in, getting as close as you could. Your touch is what mummy misses the most.

I can remember one very specific moment, when you were born I was overcome with a wave of emotion, no other feeling comes even close to how I felt when you were placed on my chest. But you know, when daddy drove us home for the first time, I looked at you and I could barely believe you were mine. As I carried you up the steps to your new home I couldn’t open the door, my mum, your nanny, opened the door and I was stood there in tears, sobbing as I was holding you. Nanny’s face etched with worry, ‘what’s wrong, is everything ok?’. My response, ‘I’m just so happy.’ I cannot even put in to words just how happy I was. I knew at that moment that my life was complete.

So what would you be doing today? You would understand what birthdays meant by now, I expect that you would open your presents in a hurry, the anticipation taking over. Mummy and daddy would obviously be taking lots of photos and videos, just as excited as you. I sit often and wonder when mummy comes up to heaven, will you still be one, or will you be 27 or 43 or however many years have passed before that moment. I hope that you’ll still be one, I hope that I will get to be 28 again, I hope that we can reset the clock so that I don’t miss any of your birthdays, that I can get to watch you grow up, watch you turn from a baby to a toddler and into a little boy and never miss a single moment.

Do you know that after you died mummy took such a long time to change her glasses, I was scared that when I got up to heaven with different glasses that you wouldn’t recognise me. I think the same thing now, I don’t want to cut my hair short, or change the way I look incase you don’t know who I am. After ruminating about it, I think to myself well what happens if many years have passed and you’re no longer one, will I recognise you? I could imagine what a two or a three-year old William might look like, but you were too young to imagine what a teenage William would look like. I am left with only imaginations, not memories. I like to think that whatever age you are when I arrive in heaven that I will recognise you straight away, I’ll know who my little William is, the little boy mummy desperately yearns for every single day. Of course most of these thoughts are completely irrational to a normal person but to me truth lies in there somewhere. These are not things that parents should worry about. I should be worrying about you falling over or making sure you learn how to cross the road properly, not how old you will be when I get to heaven.

How did the most special day of the year become such a sad day. Maybe in time we will ‘celebrate’ your birthday with Arthur, I should imagine as he gets older and understands a little better that he will want to celebrate your birthday and mummy’s birthday, but it’s so hard to be happy on a day that is fraught with so much sadness. I miss you every day, all the time. Somehow Arthur being here makes your missing presence even more profound. You should be here, you should be excited about your birthday, you should be helping mummy and daddy with Arthur, you should be three, you should be ALIVE.

Life sucks here without you, but I know that I have a reason to live. The little 7lb 11oz gift that you sent us gave us a purpose once again. We know that it is you saying ‘it’s ok’. But it doesn’t make missing you any easier. I’m really hoping that heaven gives you the very best party. That you will be happy. That you will be loved and that you will stop, pause, and blow a kiss to mummy here on earth. What I do know for certain though, is that heaven is a very lucky place to have you there. My darling little boy I wish you every happiness in the world on your birthday.

From your ever-loving mummy xxxxxx


www.justgiving.com/williamoscarmead

Hope

Time is too slow for those who wait,
too swift for those who fear,
too long for those who grieve,
too short for those who rejoice
but for those who love, time is eternity.

When I gave birth to Arthur, I looked in his eyes and knew something very special had happened. For months I had been fearing how I could possibly love another child as much as I love William, but those fears were completely unfounded. During my pregnancy with Arthur it took me such a long time to realise that it was okay to love another baby, that it wasn’t betraying William some how. That is was okay to smile again, to laugh again, and to hope again. I know that despite how much I love Arthur, it doesn’t mean that I stop loving William. It’s very strange to feel as though you have a basket of love and to have another child was somehow detracting some of that love from William to give to Arthur, but that is simply not the case. I very quickly realised that I was adding to the basket of love. Nothing, NOTHING will ever stop me loving William, nothing will ever make me not miss him or yearn for him every minute of every day. I know that however much I smile on the outside, there is always a part of me missing.

Very early on I felt that Arthur was a gift, sent from his big brother in Heaven, a message. A message to me from William to say ‘mummy it’s okay, it’s okay to live again.’  There was a time that I wouldn’t have been able to say that. A time where my life wasn’t worth living, a time when my darkest hours were spent in a psychiatric unit for my own safety. I have sunk to the deepest depths of despair, I know what it feels like to not want to live, I know what it feels like to make that decision to end my life. In some kind of strange unparalleled universe, William was the reason I didn’t want my life to continue, to take the same journey that William took, from this earth to Heaven, to be with my baby once again. But it was William that kept me going, it is William’s life that ensured that I kept on with mine, that day by day no matter how slow time passed, I put one very heavy foot in front of the other.

I had to fight for William. Fight for the answers to the reasons about why he died. I had to fight to make sure those reasons were heard, and it still is the reason I fight today to make sure that by sharing William with the world that it doesn’t happen again. It has been an incredibly hard journey thus far. To talk so much and so publicly about William’s death and not just about what happened, but to describe what happened to us, how finding him shattered our lives, to explain to people what it feels like to give your child CPR knowing full well that he had already gone. To share our deepest most traumatic moments with people. But I know that by talking about our darkest moments, sharing William and the little boy who lived, others won’t have to experience what we do. I just cannot believe how much impact William’s short life has had, and I am incredibly proud to call him my son.

Silently and behind closed doors, Paul and I suffer. When the cameras are turned off, the microphones put down, we slowly retreat back to ‘life’. We have become expert at putting a mask on, not necessarily hiding our grief, but not always showing it. This journey has played out so objectively, always seeking to achieve something constructive, there are no ‘buts’ or ‘at least’s’ when your child dies. I know that because William died, many other lives will be saved. I am thankful for every person who sees me on television and doesn’t turn over, I am thankful that every person listens and shares my message. But most of all I am thankful that millions of people have seen my beautiful little boy, I am thankful that my child is a hero, because he is my hero.

After having to live a paralleled life, one that is objective and constructive to achieve change in William’s name we are now able to be subjective again, to love, physically. I have always explained grief to be love with no place to go. When Arthur came along he gave us an outlet for our love, but not only did he do that, he has given us a future again. It has only been recently that I have been able to say and believe when I say it that it is okay to live again. It was very difficult when we found out we were pregnant to believe that we would be able to be happy again.

This is a journey, one that isn’t planned out, we don’t know the next steps. We don’t know how we will feel from one day to the next. It is a path we haven’t chosen. It is path we tread very carefully with a fear of the unknown. But what we do have again is hope. I can honestly say that it is truly isolating to live without hope. It completely robs you of energy, of motivation and depletes any reason you have to live. Hope keeps us going. William kept me going until I found hope again. William gave us hope again and for that I will be forever grateful.


www.justgiving.com/williamoscarmead

What do I think about the NHS?

In the immediate aftermath of losing William before we really understood the true consequences of how and why he died, I searched everywhere for the answers. When I received William’s post-mortem report a paediatrician came to visit me to explain the content. At best this was a summary – it didn’t really tell me what I wanted to know. I wanted to know how the pneumonia had taken hold, I wanted to know how long the abscess had been in William’s lung and which lobe it was in and how this might have affected his airway. I wanted to know the thickness of the fluid that had engulfed his tiny little chest. I wanted to know the strain of bacteria found in his lungs, ears, chest and blood. I wanted to know how that strain of bacteria affected his organs. I wanted to understand. I didn’t want to be placated with answers that were formed in such a way that they caused less hurt. Tasked with a job that no one would envy, what those who were in direct contact with me didn’t realise is that there is nothing you, or any report could ever say that could ever lessen the hurt. Carefully constructed sentences, they don’t work. Summarised reports, also don’t work. They do nothing to satisfy my desire to truly understand. It is not as though I have just taken my pet to the vets and a simple explanation regarding their illness will suffice. My child died; but one thing that must be understood is that bereaved parents do not need to be spoken to in a way that you might explain something to a child. Subsequently I called and spoke to the pathologist; it was my only choice. Did I want to speak to the man who had handled my child’s body in such a cold and brutal task; no. But regardless, he had seen William, he had understood, he was the man who was able to extract all the answers I needed.

When William died at home, we were taken to hospital by ambulance. An ambulance that had blocked our one car road. Traffic was queueing, but the paramedics didn’t move their ambulance. They did not rush us. They went at our pace. They allowed me to carry my baby in my arms out of his home for what would be the last time. As we reached the road, faces of the waiting motorists said it all. A subtle head shake as they bowed their heads in respect. The paramedic sat in the ambulance and cried with me. A man, a father, a real person, how did he feel? The worst, most tragic part of his job. When we arrived at hospital they waited until I was ready to carry my baby into resus. They stayed with us until we were ready for them to go. We weren’t a ‘job’ to them. William was carefully cradled by them, and treated with the dignity he deserved. Their demeanour our only solace of feeling secure in a situation that had completely shattered our world. They allowed me the space to lay next to William on his nursery floor and scream, beg and plead with him to wake up, knowing full well that he never would. They were human. They cared and their compassion will never be forgotten.

The process, which is the only word that can be used to describe what happens after a child dies is distant, impersonal and one that does not fill you with reassurance.

Once the initial ‘buzz’ has faded and you are left with nothing but a post-mortem report that explains how your child’s world ended is the time when the most support is needed. Simply put, you don’t get it, not unless you come to the attention of the mental health team – which I did. It shouldn’t take an attempt on a life to get the help you need. Losing William isn’t a one time event that slowly gets better over time. Every day deals another blow. Another day when the sun rises but no hope comes with it. It doesn’t get better with time, in time I suppose you just somehow live with ‘it’. You don’t learn how to live with it. You just ‘do’. What other choice do I have? For me, I wasn’t satisfied. I knew that William shouldn’t have died – his post-mortem confirmed that. But I would now have to wait another 5 months before the inquest would take place. 5 months. 5 months is a long time in an average life but not in the life of someone who counts every day, hour, minute and second, each of which plays out like an eternity. I couldn’t wait, and I wouldn’t wait. So my journey of investigation started.

I started by familiarising myself with NICE guidelines, which further progressed onto the British Medical Journals – which I had to pay for. I researched studies that took me around the globe and spoke to specialists from all walks of life. But I begun by weeding out the direct contact details of the leading paediatric respiratory specialist in the UK. Everything had to be dealt with objectively; this was the hardest part – I mean how do you stop writing, talking and generally acting in a way where you’re not falling apart. I still don’t have the answer to that. Everything had to be neutral, unbiased, constructive and without blame. I wanted the truth not a played down version to somehow make me feel ‘better’, I knew I would never feel better. When the responses from the specialists started arriving in my inbox or answer phone the story became alarmingly obvious, startlingly clear and horrifyingly obvious – William should never have died. Most importantly I spoke to paediatric respiratory, microbiology and sepsis specialists. Consultants that have spent years working in one specific area. Not a generalised approach. As the inquest approached I had the facts I had sought. In the meantime the doctor’s surgery who had ‘treated’ William had opened and closed a Serious Event Audit. Which we hadn’t been informed of until we were sat in the inquest. How can the general practitioners have a meeting and close an audit when they have not even discussed William’s care and concerns with us, his parents? I would find it very interesting to see the results of their initial SEA, which was closed after no failings were found, to compare that to the NHS England report that later detailed failing after failing. When I first heard news that a SEA had taken place but I’d heard nothing about it, I really sat down to think how I would approach this. Because clearly if I rolled over and took everything at face value I would get the duty of candour but I wouldn’t have answers.

Who, what, when and where is the easiest way to explain an inquest. Who died? What did they die of? When and where did they die. To assist with answering these questions they bring in a paediatrician. Not a specialised one, a general one. So, immediately I was concerned. How can a general paediatrician who has no experience of empyema and pleural effusions confidently ascertain and answer questions in relation to William’s death. Simply put – he couldn’t. An expert in his field, but an expert in the areas that contributed to William’s death he was not. He was able to conclude that had William had different treatment to what he received it was highly likely that William would have survived. That was all we needed for an NHS England investigation to be opened. Unless you bring your own specialists at your own cost, you get what you’re given. The paediatrician that we had come to Cornwall 3/4 times a year for a day. That’s how many days they allow for inquests into baby’s deaths in Cornwall. We were allotted 2 hours for William’s inquest – it lasted 8. How the family’s waiting behind us felt I will never know.

With my knowledge about how investigations are handled I suspected it wouldn’t be an easy ride – it wasn’t. However, throughout the investigation I was involved in every step. Perhaps because I was a constructive nuisance, I was persistent, and I wouldn’t accept answers that I felt were flawed or were not relied upon with justifiable evidence. Eventually after several hundred emails, multiple drafts of the report, and numerous meetings, the report was finalised in January – a report that I was satisfied with and reflected the truth accurately. A report that highlighted multiple failings in William’s care, from each GP we spoke to, the 111 help line and out of hours doctors. Ultimately if William’s chest infection had been diagnosed appropriately and not as a viral infection – he would have received much-needed antibiotics. If that chest infection had been treated the progression of pneumonia would not have happened, leading to a pleural effusion, lung abscess and the sepsis that would take his life.

I have lost count of the number of times I have been asked to point the finger, or blame, or speak in a manner that puts the spotlight on certain people involved. I have no desire to do that. Those involved have apologised, face to face and they have been held accountable for their mistakes – after all – unless they were living in a cave during the first part of this year, it was a bit hard to miss the media. I have met face to face with the GP that last saw William for what would be the last time, the doctor that should have sent William to hospital. I have looked in his eyes and told him how Paul and I feel. I have been asked if I will take our complaint to the GMC, phrases such as “shouldn’t he be struck off?” For me, to take such action, would be to prevent him from potentially saving another life. Those that went into work each time they saw William didn’t act in a malicious way, they didn’t allow William to die on purpose. They are aware of their mistakes and the systems that allowed for those mistakes to take place are being changed. I hope that those involved in William’s care will not make those same mistakes again. Their index of suspicion has changed, their threshold for prescribing antibiotics has lowered especially when it is clinically evident they are required. Their awareness of sepsis has been refreshed in the most devastating circumstances. I do not want my life to be consumed by hate, anger, and regret. To seek revenge on those involved would not honour William’s memory in the way that he deserves; and it would not bring William back – and that is all I want.

There are faults that lie within the NHS – some of which I have encountered. Those of which I have I’m sure, I could think of a better way they could operate. I’m sure many of them could be rectified with an endless pit of money – which the NHS simply does not have. But the NHS is built on foundations of compassion by those who go to work to do good, to do their best to help a patient to feel better, make their lives easier and with dignity. There are some of course who do not, there are always bad pennies, but thankfully they are far and few between. I have had my own negative experiences with my own treatment and miss-diagnosis in the past. But if it wasn’t for the NHS I wouldn’t be here – twice my life has been saved. If it wasn’t for the NHS, William wouldn’t have been born. The NHS did not cause my son to die – decisions of specific people did.


 An eBook of 50 illustrations donated by 50 world class illustrators has been created in William’s memory. The book includes a foreword by me and Ron Daniels CEO of the UK Sepsis Trust. There is also a little game that you have to find William painting within the book. The book costs no more than £1.49 with all proceeds being donated to the UK Sepsis Trust in William’s memory. Please support us and buy your copy here.

Apple version

All other versions


Williams Just Giving Page

Your hand prints on my heart

Painting pickle xx

Painting pickle xx

After checking the paint was non-toxic, covering the floor in a plastic mat, and covering the table in brown paper, we undressed you to your nappy and put you in a t-shirt bib. We were all set. Ready to make a mess, ready to make more memories, ready to make prints of your ever-growing hands, they were slowly losing their chubbiness, and mummy wanted to capture every change as you grew from a baby to a toddler. After 30 minutes of painting and 29 minutes of wrestling with you to stop eating the sponge dabber, we finally got a lovely clear hand print. It was time to pop you in the shower, after covering yourself in little hand prints, you had done an excellent job of turning yourself into a smurf. Mummy still has this little hand print on the fridge, a constant reminder of the fun we had in the short time we were blessed with you. Little did mummy know, your next hand print would be taken after you had died.

Your hand I remember placing on mummy’s face as I held you at the hospital, to feel your touch, and to feel your skin on mine. I can still feel your little hand on my face now, and your not so chubby fingers entwined with mine. I held your hand for so long that by the time I couldn’t hold you any more, your hands were warm. I wanted so much to make you warm, to pull you so close to me that somehow my breath would warm you up, but it wouldn’t. Instead I cuddled you tight, your head resting in my neck. Mummy’s tears making their way down her face landing on yours, some would land on your eyes and it would look like you were crying. Mummy had enough tears for the both of us.

When I was pregnant I would often think how amazing mother nature was. I would marvel at your perfect toes, perfect ears, perfect everything. I tried for so long to understand how all of your little features had grown and formed exactly as they should be, how, by eating food full of nutrients and sleeping well it would in turn look after you, keeping you healthy, my body nurturing you and keeping you alive. How it could even be possible that there were two hearts beating in mummy’s body. Now your little heart wasn’t beating any more, and as I laid there, with your hand on my face and my tears falling down your cheeks, it felt like mine had stopped too.

As I lay there with you wrapped around me, I could not have felt more at peace with you in my arms. That’s where you belong, in my arms, I knew these moments were sacred. I knew these moments were limited and I knew my time holding you was running out. Nothing could prepare me for the moment that I had to place you in your coffin for the last time. It felt like I was closing the lid on my life, and the truth is, I was, you were my life and you still are now. That’s when the fear set in, knowing that I would never see you again, never kiss you again, never hear you again and never be able to hold you again. I had been the first person to hold you when you were born, I was the last person to hold you before you died, and I was the last person to hold you before the little lid was shut for the last time, the light being diminished from my life forever.

My special daddy…

Today is a day that is a day dedicated to Father’s, but daddy every day is a special day that should be dedicated to you.

I know that if I was there, I would have made you a special card, with sticky fingers and lots of mess. I would have made you ginger bread men at nursery, but the little men would have come home with no arms, because I might have eaten them on the way home. Mummy would have told me not too, but I would have done it anyway, you would have loved them without arms anyway, I just know it.

With mummy’s help I would have made you breakfast in bed, but not before having snuggles, and then I would have done some really good jumping up and down on your bed. And because you’re super lucky I would have helped you eat your toast, because that’s my favourite.

But the thing is, I’m not there. But today doesn’t feel any worse than yesterday or tomorrow, maybe slightly more poignant, because we don’t get to wake up together any day and this makes me really sad. But I don’t want you to be sad, because you’re being the best daddy that I could ever wish for. And for every day that we spend apart is one day closer to the day that we’ll be together again. But daddy, you have a really important job to do, you and mummy. I gave you a really special gift, I gave you a little baby, a little brother or sister from me, because you deserve it, you deserve to be happy, you deserve to be able to hold a little baby again and you deserve to love and be loved. Just like we did.

Daddy I really miss you, and I see how upset you are, I see mummy cry and hurt and I see how you look after her. I know how much you worry about her. I know that despite all of your own pain you make sure that she is ok and the little peanut growing inside her belly. I know there will always be something missing from our little family of four, but just know daddy that I follow you around all the time. I never leave your side. I know that your strength comes from me and as you gently put one foot in front of the other, I will hold you. I will quietly slip my little hand into yours and slowly help you forwards.

From my little white fluffy cloud I’m sending you the biggest, squeeziest of all the hugs.

I love you daddy, your little William xxxxx


www.justgiving.com/williamoscarmead