This blog was first published on the NHS Vale Royal CCG website in September 2015.
A scene familiar to doctors and nurses. An urgent call in the middle of the night followed by a rapid fumbling with clothes and shoes as you shake the too little sleep out of your head. The run through the quiet and empty corridors of the hospital before bursting onto the ward, your destination immediately made obvious by the busyness and urgency around one patient. As you approach you see resuscitation already underway, someone doing chest compressions and someone else ventilating.
Many of you reading this will relate to the scene. Two things make this memory different for me. Firstly, the patient is not an elderly person potentially coming to the end of a life well-lived,but is only 17 months old. Secondly, the patient is my son.
Over 11 years ago, this scene brought to an end 7 months of living in Birmingham Children’s Hospital with our son as he was treated for a rare haematological (blood) disease (Haemophagocytic Lymphohistiocytosis). He had undergone chemotherapy and a bone marrow transplant, but eventually died with a respiratory infection.
I’m not going to give you a blow by blow account of the 7 months in hospital, nor the final minutes as he died, but my life was changed forever. It had already been changed 17 months previously when our twins had been born. It was changed again when we found the non-blanching rash and took him to the Out of Hours service, and then the hospital. The relief when he didn’t appear to have meningitis/septicaemia, yet the anxiety about the low platelet count. Growing concern as he become more poorly rather than better, then the devastation as the diagnosis was eventually made, followed by months of treatment. A traumatic, roller-coaster during which time we essentially lived in the hospital, one of us sleeping by his bed every night, the other either in Edwards House (I cannot thank Edward’s Trust enough for providing this accommodation and the support that came with it. I wonderful organisation without whom I genuinely don’t know how we as a family would have coped) or at home. Our daughter, his twin sister, did the same, learning to crawl, talk and walk on the ward during those months. Ask anyone with young children about how much happens in the 7 months between 10-17 months of age, yet for us that time watching our daughter develop passed in a bit of a blur.
Even though we knew he was really poorly, even though we knew he was on Intensive Care, nothing prepares you for seeing someone performing chest compressions on your infant son. It felt as though my world fell apart at that moment. I have to do annual resuscitation training. Often the trainer will bring a paediatric manikin, or at least will talk about how to perform resuscitation on a baby or child. I sit through these sessions, I learn from them, I do the practical, but I guess you now know what I will be thinking about.
You don’t expect your children to die before you do. Nothing prepares you for that.
I have never written about this before, and rarely talk about it. It’s not that it is a secret, but it is not the kind of thing you tend to routinely tell people when you meet them, and if you don’t tell them then, when do you tell them? There will be people reading this, I expect, who have known me for some time, yet who do not know about this. I guess the question, therefore, is why I am telling this story at all? I think maybe it is precisely for that reason. Precisely to make the point that we don’t know everything about the people around us. We don’t know what people have lived through and experienced, and we shouldn’t make assumptions.
I am sharing this blog for that reason, but also because the time seems right somehow. It is part of who I am. If you want to know me, then you need to know this. This experience has changed me more fundamentally than anything else.
Not long ago I blogged about the power and importance of personal stories, so here is this one. Thank you for reading it.
Dr Jonathan is a GP at Swanlow Practice in Winsford, Cheshire, and Chair of NHS Vale Royal Clinical Commissioning Group
Follow Jonathan on Twitter @DrJonGriffiths