Jonathan Griffiths, GP and bereaved parent
When our son, Joseph, was 10 months old, just before Christmas in 2003, he developed a non-blanching rash. This is the kind of rash that parents are told to watch out for – a rash that doesn’t fade away when you press on it – as it can be a sign of meningitis or sepsis. We were not too worried about him having meningitis as he was otherwise seemingly well in himself, but I did take him to the Out of Hours GP, who sent him to the local hospital for a check. He didn’t have meningitis, he didn’t have sepsis. He did, however, have a low platelet count.
There are various causes of low platelets, not all being serious. After initially being discharged, however, he became less well. We were home for Christmas but took him back to hospital shortly afterwards. Very soon we were transferred from Wolverhampton to Birmingham Children’s Hospital. He was diagnosed with Haemophagocytic Lymphohistiocytosis (HLH). This is a rare haematological condition where the body’s own immune system attacks the blood cells. It is a very serious condition.
We spent the next 7 months in hospital. Treatment included chemotherapy and bone marrow transplant. He endured various complications along the way including emergency surgery leaving him with a colostomy bag, acute renal failure (which improved/resolved with dialysis) and ultimately a respiratory infection which led to multi-organ failure.
He died in hospital on our 10th Wedding Anniversary in July 2004.
I have been thinking about what I would wish you to know about our experience of being bereaved parents. What would be useful for you, what would be useful for me? I could tell a more detailed story about our time in hospital and how that impacted on my work, or about our other daughter (his twin) who learned to walk and talk in the corridors of the hospital while visiting. Maybe I should tell you about the support we received from family and friends or of the experiences with work. There would be value in hearing about interactions that were not so positive or about the realisation that I needed to return to work at some point, the struggle in doing so and the long journey to feeling there was any kind of normality to be found.
Any of these topics would be interesting. I have a story to tell. It’s a story that I think needs to be heard, but it’s a story that doesn’t always want to be heard. Talking about child death is not a topic of casual conversation. You can’t drop it into small talk and expect a neutral response. This perhaps, is the thing I will talk about in this piece. The importance of acknowledging that children do, unfortunately, sometimes die. This evokes such a visceral response in so many people that we brush the topic away. It remains hidden, and with it the bereaved parents who experience a walk along a long and lonely road.
How would you respond to hearing that someone had been bereaved of a child?
I would suggest that you lean into this. Don’t be the person who avoids talking to them about it (which is tempting). Don’t tell yourself that they ‘probably don’t want to talk about it’ or that you would make them more upset by doing so. The most awful, previously unimaginable thing has already happened. Asking them about it will not make it worse.
I was recently at an evening reception event. There had been drinks, a speaker, a meal and now people were mingling around chatting. A friend and colleague approached me. “Jonathan, I’ve heard that one of your children died? Is that right?” He said it sensitively, he was genuinely interested. I replied that it was true. He stood us both up, he gave me a hug, we sat down, we talked.
That’s how you do it.
It’s important that you don’t shy away from the conversation.
What you say as part of that conversation, however, is also important. In fact, I would suggest that you need, first and foremost, to listen. Another good friend and colleague of mine talks about the importance of ‘bearing witness’ to the experience, to the pain. Ask yourself the question- does this person need to be heard, hugged (maybe metaphorically) or helped? We tend to jump to the ‘helped’ but I would urge caution in that approach and suggest that if you first listen, bear witness and allow the person to be heard, then you will already be helping.
And now for something you really must not do. You must not try and help by suggesting that there was a reason or purpose behind their child’s death. When a child dies things feel so desperate that we look for reason and meaning. We look for something to explain the awfulness of it all, we want it to make sense. In fact, you just need to acknowledge the awfulness.
Nicholas Wolterstrorff says this:
“Don’t say it’s not really so bad. Because it is. Death is awful, demonic. If you think your task as comforter is to tell me that really, all things considered, it’s not so bad, you do not sit with me in my grief but place yourself off in the distance away from me. Over there, you are of no help. What I need to hear from you is that you recognise how painful it is. I need to hear from you that you are with me in my desperation. To comfort me, you have to come close. Come sit beside me on my mourning bench.”[i]
Can you do this? Can you sit beside someone, acknowledge their pain and be there for them? Can you do it without offering platitudes or trying to make it all seem ok? Can you bear witness to their pain?
This sounds, on the surface, like an easy thing to do. In reality it is difficult. In doing this you will be confronted with the reality that awful things happen that we cannot explain away or make sense of. Moreover, in doing so you are confronted with the reality that if this has happened to someone else, it could happen to you, to your child. No one likes to think of this, yet these conversations will likely bring you to this point. Please acknowledge this to yourself. You may need to take some time afterwards to manage any anxieties this has caused you. Don’t let this stop you from being there for your friend or colleague who is suffering and bereaved.
If you have read this far, then I thank you. You have listened to part of my story and heard what I have to say. There are many more bereaved parents out there, more than you might imagine. There were 3,577 child (0 – 17 years) deaths in England in the year ending 31 March 2024[ii]. The path of least resistance is to note the numbers, and deal with it as ‘data’. I would encourage you to connect emotionally with this. 3,577 families bereaved and grieving in one year alone. And the bereavement and grief does not stop after 12 months – it is there for good. Think on that, and when the opportunity arises, be kind, be present, try and bear witness to the pain and see if you can join with the bereaved on their mourning bench.
[i] Wolterstorff, N. (1987) Lament for a son. Grand Rapids: Wm. B. Eerdmans.
[ii] https://www.ncmd.info/publications/child-death-review-data-release-2024