Those days after William died, the day when I kissed William’s soft skin and whispered in his ear ‘please tell them what happened my darling boy’, the days spent waiting, wondering, hoping they would find something, something that would tell us what had happened to our beautiful little boy. As I would sit staring out of the window ruminating about my little boys broken body being transported up-country on his own to be operated on in a procedure that should be reserved for adults only. Wondering if he was ok, wondering whether they would look after him, wondering how the pathologist found the strength to do that job. I was told it would take a while for the post-mortem results to come back but just five days later William was returned home, and we were given preliminary results. Something we hadn’t anticipated, after all ‘SIDS?’ had been mentioned on William’s medical record. Something I later found out. But I knew, I knew that William didn’t just die. I was right.
In those five days I had pulled my hair out strand by strand and scratched my skin until it bled, anxiety winning the most debilitating war, whilst I waited. Can you imagine being in a position where you beg God, where you hope, where you wish that your child died of something so rare that no-one could have spotted it, that the 382 glorious days we were blessed with were borrowed time, that William would have been taken anyway. Can you imagine feeling that way? Toying with the possibilities in your head and deciding on one that somehow you might find easier to live with. But no, William didn’t ‘just die’, he didn’t die from something so ultra rare that he was no longer suffering from, William died from something common, sepsis.
When the pediatrician came and sat on my sofa, my pleading eyes, begging her to tell me something I could make peace with, but she didn’t. She told me that William died from something that doctors should be looking out for. Not long after, I spoke to the pathologist himself, he told me that William’s little chest was full of viscous, purulent fluid. Why didn’t the doctor pick this up? The one who listened to William’s chest just before he died. The one who told us his chest was entirely clear.
From the moment William was taken from us, from 08:47am on the 14th December 2014, from the moment the paramedic uttered those words “I’m sorry my love, but he’s gone” the questioning began. A constant reel of questions on repeat. In my head I would answer a question, but then immediately pick apart the answer and start the process again. That hasn’t stopped, what I do know is how William died, but what I will never be able to answer is why? Why William? William was well looked after, and loved beyond comprehension. I will never know why those doctors involved in William’s care made mistakes, I will never know why we, as parents weren’t listened to.
Very soon after William died it was obvious that things had gone desperately wrong with his care. Within a few weeks it was already apparent that the process after a child dies had flaws that are simply unacceptable. We were left to approach the doctor – the same doctor who had let William down – for help. Can someone help us? Is there someone I can talk to? Appointments that required us to dress, drive miles to the doctors, and sit in the very room where William was sent home rather than being referred to the hospital, and take advice from the very doctor who had examined William. We were offered 6 sessions of counselling. SIX. Of course it wouldn’t start tomorrow it would be at the earliest, next week. As I sat down for session number one, I was reminded that this would be the first of six sessions that lasted approximately 50 minutes. At this point I knew I was on my own.
We had what is called a ‘rapid response practitioner’ someone who you can liaise with. Someone who would tell you what was happening, what would happen next and what to expect. Any bereaved parent will tell you, this is virtually impossible, the waiting is excruciating. The not knowing is equally as painful as knowing, but the parental instincts inside me told me I had to know. So the journey begun. The journey of looking at William’s death objectively.
I’m not really sure what people think, those looking in, those not immediately involved with William, or indeed following our story about what it takes, but it is not a case of filling in a complaint form and sending it off to the NHS. I’ve not written a blog for a while. Mostly because once I sit down, I just want to be left alone with my own thoughts, not because I’m feeling better, I’m not. You see, what I’ve had to endure these last 520 days are something I do not wish upon my worst enemy. I have lost count of the meetings I have attended, conference calls I’ve dialled in to, I lost count of the emails I sent at around the 600 mark, the departments I’ve had to phone, chase, follow-up, push, and persist for them to do what they are supposed to do without me asking, the doctor’s surgery, SERCO, South Western Ambulance Service CEO, the Kernow Clinical Commissioning Group MD, the Child Death Overview Panel, the Coroner’s office, the pathologist, numerous pediatrician’s, rapid response practitioner’s, NHS England South, NHS South South West and that is not an exhaustive list; and that is before the inquest even begun in June 2015.
After the inquest, when the actual investigations into Williams death started was when the real journey started. I don’t think anybody really knows exactly what it has taken, just Paul. I have read through the transcript of the telephone calls I made to the health professionals in the days leading up to William’s death, I heard his little voice in the recordings, I’ve listened to the 999 call I made when William died, I’ve read and re-read William’s medical records and the witness statements, I have lost count of the amount of times I’ve printed and annotated William’s post-mortem report, I have analysed NICE guidelines, the British Medical Journals and I won’t even list the different Royal College guidelines, I have contacted and spoken to many highly respected medical consultants in microbiology, thoracic, cardiology, infectious diseases, pediatrics, and pathologists, oh and the genetics team. I have studied case-law and how this is applied to medico-legal reports. I have studied and learned medical terminology and what it means and how it is applied. I have liaised with the NHS 111 pathways team including the director, the Director of patient Safety for hospitals at the CQC, I have seen, used and experienced the algorithms used by NHS pathways, I have had to deal with the Judicial Conduct Investigations Office, the council and of course NHS England, I won’t continue.
What is the purpose of me telling you some of what is involved? I’m telling you this because when I set out to get William the justice he deserves I wanted to do one thing, and one thing only. I wanted to make sure that those involved in William’s care understood that my son’s life, William’s life is more important than any system. That despite the fact he couldn’t talk, his voice mattered and still does, and as William’s mum it was my job to ensure that his voice was heard. After 520 days we have finally received a full written apology from NHS England on behalf of those organisations involved in William’s care. We have had apologies from each party involved, and of course from the Government. I am exhausted, I am weak, I didn’t have any strength to begin with and I certainly don’t have any now, I am physically and emotionally spent. I have fought so damn hard, and although you might think I have succeeded, I don’t win anything, there is no reward, William doesn’t come back, he is still gone, and I am still left wondering why.
“The RCA panel / team are indebted to William’s parents for their persistence in ensuring that all of the facts were understood and that lessons would be learnt, and for their understanding approach in the context of devastating circumstances for them. The parents of William do want an apology from the parties and organisations concerned. SWASFT has already issued a formal apology to them. NHS England will give an overall apology to them on behalf of all the NHS organisations involved. The OOH doctor formally recorded his apology at the inquest. One of the GP’s from the practice has communicated in writing an apology to the parents and a private meeting between this GP and mum has also taken place…a final conclusion…the panel have concluded that if William’s parents had not been involved as openly and fully…the full extent of the contributory factors and learning would not have been identified…I want to offer this as a written apology on behalf of all of the NHS organisations involved in William’s care.”
Never underestimate the power that a mother’s love has. This is all driven by love, by William, by my darling little Grumpus.
Well done Melissa and Paul in your fight for justice for your beautiful William. Your little boy would be so proud of his mummy and you have done so much to educate the public about Sepsis. William will never be forgotten and you deserve so much luck and happiness when your new little one comes along. You have such a big heart, Melissa, and such strength and determination. You have accomplished so much in memory of William and that should be applauded. The tragic loss of William should never have happened and hopefully this will never happen again to someone else’s child and that will be down to you, Melissa, and your true grit. I am so pleased the medical authorities have been brought to account over this and you have finally received the long-awaited apologies you so fully deserve. My heart goes out to you and Paul. Little William is the brightest star in the sky. I wish you all the love and luck in the world and look forward to reading about your continued progress. All the very best, love, Aileen xxxx
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Thank you so much for your lovely words. I don’t really feel as though I have any strength but determination as Williams mummy I can accept. William made me the person I am today, I owe him my life xx
In the short time William was on this earth he accomplished more than the majority of people do in a long lifetime. Because of William other sick children and adults will live. This dreadful, insidious illness will claim fewer lives because you, Melissa, and William’s daddy, Paul, have turned your heartrending, intolerable grief into a force for good. You are educating not just the people in the street but the professionals whose instincts or knowledge may have prevented them from going that extra mile, that extra inch, to save a child from dying. I cannot begin to imagine the depth of your sorrow, but you are stronger than you think to have achieved so much in William’s name. Now you must make sure you rest, and prepare for the new life growing inside you. Wishing you and Paul all the happiness with your new baby that you deserve, and hoping you will one day find peace of mind. God bless you and keep you and your family safe.
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Melissa, you have done so much for me and my son…. you know you have. You saved his life for a start! Before I saw you on TV I had no idea what when symptoms of sepsis were. I had heard of sepsis yes; but no idea what to look out for. To this day I know it was you that saved my son. He was in such a bad way and had I not seen you on tv that night…. well I can’t begin to imagine. I owe you my life. You know that if there’s anything at all I can ever do for you please let me know. You are an amazing person and are so incredibly strong. You and your husband have been through so much, I am so glad that your awareness has paid off. My little boy is alive because of you. I will never ever forget that. I really really hope that one day we can meet so I can thank you in person. Because I really can’t begin to thank you enough! I could go on forever how you saved my miracle child… the child I was told I couldn’t have! Massive respect to you and what you have done. Massive respect. You have done amazing. Never ever give up. All our love xx
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Thank you Gemma, I am glad that through Williams tragic death something positive has shone through. It is a very high price to pay but something I’m incredibly proud of…my little William xx
That is a wonderful story, Gemma. All best wishes to you and your precious son.
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Finally, although this can only bring cold comfort to you.
As always, a beautiful, heartfelt and gracious post which brought me to tears.
I hope William’s brother or sister is as eager to be here as we all are to see him or her.
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We’re half way there so not long, starting to get used to the idea now… Thank you so much x
I can hear all the emotion in every word. No parent or anyone should have to fight so hard for what is rightfully owed. Well done for showing such perseverance. I have said the same for raising stillbirth awareness in the name of my son Leo – no amount of good that comes from Leo’s death will ever right the wrong of Leo’s death, but it does help us see beyond it. Much love to your family and especially William xxx
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I couldn’t refrain from commenting. Perfectly written!
You have come such a long way and achieved so much in a relatively short space of time. This probably seems an eternity to you and admire your endless determination to gain justice for William and finally at last an apology. I do hope that this will bring along with it, as you say a change of behaviour. It will be permanent and to continue to do so to make that change that William so rightly deserves. Melissa, as always am moved after reading your blog. I often think back to the first one I read to the present and all the beautiful pictures of William. Time marches on but must feel it’s stood still for you. You are doing such a good job in raising awareness of William and Sepsis. Oh how much you must miss him. Take care with your pregnancy. When this little bundle comes along you will be able to tell your son or daughter daily about their wonderful brother and draw comfort from this knowing you are keeping William’s memory alive always. x
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