In August 2017 I was invited by the Glasgow Children’s Hospital Charity to write something as a contribution to a funding application for the development of a family bereavement support programme in Glasgow NHS. (Specifically, observations regarding my families experience as regards the circumstances of my son’s death and the support we received.)
The following is the text submitted.
My son Christopher passed away on the 27th of October 2014. He was six years old.
He died in the house; we didn’t know this however, at the time. Paramedics were called, and he was rushed to Yorkhill children’s Hospital where he was pronounced dead some time that evening. I think it was about 6.15 but I can’t be sure – I might be getting the time mixed up with the time my daughter was born.
The facts are a bit of a blur; for sure, though, it was a Monday evening
My wife and I sat with Christopher in a medical consulting room for a little while; we left him there, and drove home accompanied by Christopher’s grandparents. We heard that a duty nurse had sat with Christopher through the night, though I don’t imagine that it would have been for the whole night.
The next day, I couldn’t face returning to the hospital – we arranged for Christopher to be brought to a funeral parlour closer to home.
If I think on it now, it appals me, to my core that this was how my last visit to the hospital played out. Yorkhill Children’s Hospital had looked after Christopher from even before he was born; the care had been exemplary. But subsequent to his death, from the moment he died, the care stopped – and it has been virtually non-existent since.
There is an expression I have heard, subsequently: ‘I went into the hospital with a child; I left with a leaflet.’ The night Christopher died, we didn’t even receive a leaflet. We left with nothing.
Some time later, about a month I think, we were invited to meet with Christopher’s consultant to discuss the exact circumstances of his death. We still couldn’t face returning to the hospital so we met in an adjacent facility. The meeting was hugely comforting, as much as it could be – it was confirmed that everything that could have been done, was done. And so ended the medical remit. I asked, then, about support for us; the nurse on hand mentioned something, vaguely, I think we were forwarded some information, I have recollection of looking at a typewritten A4 sheet but in all honesty I cannot attest accurately to the truth of the circumstances.
I was in post traumatic shock.
Subsequently, I did try to source bereavement support – providentially, through my gp, I was met at Robin House; they were very kind, but apologetic. They confirmed that no, there was nothing they could do for us, and that no, there was no family bereavement support services that they were aware of.
By word of mouth, I’d heard about the Brightest Star, a charity organisation for supporting bereaved families. About eight months after Christopher died, once I’d mustered enough resolve to pick up the phone, I attended my first meeting with the Brightest Star – and from that moment, my recovery proper began.
Eight months . . . after my son had died.
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Late one night, one night that Christopher was being treated in the cardiology unit of the hospital, I had a conversation about child loss with the resident consultant; I think he was on call. I never saw him again – but the conversation we had stays with me. It seems odd perhaps, that we ended up discussing the consequences upon parents of the death of a child; Christopher was about three I think at the time. His death, though ever a concern, was not prescient. Nevertheless, the conversation centred on those consequences resultant. It was less a conversation than the consultant expressing what was clearly a hard earned opinion: that if one were to equate the consequences of child loss on a parent to a physical condition, it would mirror that of massive loss of limb, as a result of an extreme trauma/accident. He pointed out however, that a physical trauma or disability benefits from the support of the full extent of the medical profession – prosthesis treatment, medicines, technology, clinics, recovery programmes, psychological support etc etc etc, but for the bereaved parent there is nothing – and the bereaved parent is equally as disabled.
To make matters worse, the disability the bereaved parent carries is hidden. It is invisible – but no less crippling.
At the time, this conversation was incomprehensible; I was a parent then, not a bereaved parent – but his observations are entirely accurate, insofar if you were to ask me now: am I crippled? I would answer: categorically: yes.
I’ve heard of another observation – it may be my own, I’m not sure, nevertheless it is no less true: ‘when a child dies, the care for the child stops; the care then for the parents should then begin.’
But, again, if you were to ask me, what care has there been forthcoming for me and my family? There has been none. We have had to fashion that care, we have had to seek it out, entirely unsupported – and what there is, is hardly profuse; we’ve had to piece it together – and all at a time when one can hardly function, when one is unquestionably in a state of extreme distress and shock. (I once described my state to my brother – a consultant himself, a professor of critical care medicine. He stopped me midway: he said: you’re not describing grief; you’re describing trauma.) Imagine, being in such a desperate condition, and being abandoned to seek your own support? One would not expect someone who had lost their limbs to forge their own prosthetic and learn how to walk again. But that is effectively what it has been like.
If one could rely on friends and family, well, then their support is obviously beneficial. But every bereaved parent has their appalling tales to tell of the loss of such personal support; there is stigma with child loss (which I could argue extends even to the point of discrimination) – people, on the whole, turn away; they are hardly prepared nor do they have the aptitude to deal with a bereaved parent. Even the most well-meaning can be detrimental.
I think I’ve been lucky; I’ve inherited certain attributes that have driven me to find support – but I’ve met others, who are completely lost, that are desperate still, and suffering intolerably; they are at terrible, terrible risk – as vulnerable as it is possible to be; the isolation being the most debilitating factor. I would that I could say that the absence of support subsequent to the loss of my son was simply a zero impact consequence; but it is not. One is unquestionably isolated by grief; that the hospital contributes to that sense of isolation is simply unforgivable. The hospital was once our greatest friend; it feels like a friend that then turned away from us at our worst moment – and that only serves to compound the isolation.
Though this may all appear harsh, I am in fact writing with restraint – ultimately I would not wish to provoke negative consequence. I have no doubt that the desire to care, and that abounds in the children’s hospital, extends to the families; I know it, I’ve been witness to it and I’ve benefitted from it.
But if I’ve been invited to comment upon the necessity for support for bereaved families, I have to highlight how appalling its absence has been – in order to applaud properly its inception.
Families are destroyed by the death of a child – parents, siblings, grandparents . . . and I can attest, that those closest, the parent, and the sibling, have to learn how to live all over again; they have to learn how to walk again. I’ve had to do so, pretty much unaided, I still am.
I could do with a guardian angel. I’m sure every bereaved parent could. If bereavement support is now being established, it’s remit I would propose is in fact simple – to be that guardian; and to do so, in my opinion it need not do much, other than to be there, to be available, constant, to be a reliable presence – and, it needs to be pro-active: the one burning cannot be expected to reach the faucet.
And it must be there for as long as it takes . . .
MA August 2016