Though we knew that it was always possible that it would happen … no, given the almost complete certainty that it would happen some time in the near future, the news that Fatima had died still shocked most of us. The monitor screeched an alarm at 5.00 a.m. – it could no longer find a pulse. My colleague raced to her bed, called the emergency services and started the usual measures to try to revive her. To no avail.
Fatima’s heart had stopped beating while she was asleep, three weeks after her second birthday.
Her prognosis had always been bad. Sickly since birth, the doctors had diagnosed a genetic defect which led to a progressive form of severe muscular dystrophy. She quickly had to be placed on a respirator, as her diaphragm and thoracic muscles were too weak to support her breathing adequately. The longer she lived, the more her muscle mass simply disappeared, leaving her arms and legs thin and stick like. She could hardly move at all, though she was working on grasping things – and getting better at it.
She had a great sense of fun –for mentally her development was normal – and a wonderful sunny smile, accented by two of the biggest, shiniest eyes I have ever seen, that could break your heart. In the end, it was her own heart that broke; the breakdown of muscle tissue wrongly coded by her DNA working through to the inevitable end.
So I’m here working an unplanned night shift again; the colleague whose watch it happened on last night has been given tonight off. That’s all right; it’s one of the things that teams are for. We’re engaged in building up a new team at the moment, to service a new concept our firm is working on; a small group of four children in a special unit with facilities for mothers/parents to live-in with them – a preparation for a possible return to the home environment.
All of these children are extremely ill and we are aware that any of them could die at any time. Yet it’s still a major trauma for everyone when that actually happens. We started this project in January and
Fatima is the first child we’ve lost. Of the four, we knew, theoretically at least, that she was the one with the worst prognosis and that there was practically no chance that she would live for much longer. But we have experienced once more today that there’s a major difference between what you know theoretically and what you experience practically.
Thankfully, the work has its positive aspects as well. Take Jenny, for example. Last autumn, shortly before her third birthday, something happened. What it was exactly, the doctors still aren’t sure. Firstly she became deaf. Then, within the space of a few weeks, she became desperately weak, so weak that she could no longer walk, her autonomous breathing reaction disappeared and she developed an almost complete facial paralysis. Something had gone seriously wrong in her brain – to be precise, in her brain stem – but they still don’t know exactly what.
In hospital, the doctors installed a feeding tube, a tracheotomy tube and put her on a respirator. Slowly her condition stabilised and she was released into our care in January, accompanied by her mother. Since then, she’s been recovering.
The big problems – the deafness, the facial paralysis and the breathing difficulties – are still there. But they’re starting to look manageable now, for Jenny has recovered her strength. Where she had to be carried a couple of months ago, she’s now running around – still attached through the tracheotomy tube and two thick corrugated plastic hoses to her respirator. Generally that’s being carried by one of us, who she can keep well occupied chasing after her.
She has been developing a means of communicating with her environment, involving quite a complex combination of gestures and shrugs. She has a Bobby-car with a trailer and when her respirator is loaded onto the trailer she’s basically independent (at least until the battery runs down) and takes off on occasions on exploratory expeditions through the care centre to visit various friends she has made. Recently she has been trying to discover how fast she can make the damned thing go (and institutions have the advantage over normal households of long corridors) and is even experimenting on maximising her speed around corners.
Jenny, as you will be gathering by now, is quite a determined young lady. That determination is one of her greatest assets at the moment. Indeed, it is priceless because it is underpinning her basic picture of herself as a normal little girl – one with particular, special problems to be dealt with, to be sure, but one also who is quite certain that she will deal with them.
And, if everything goes right, she will be able to live a fairly normal life. She may remain deaf but that’s something she’ll be able to deal with, with the right training. She may need the respirator, but probably not all the time – already she’s disconnecting herself from it for short periods, testing and training her own residues of breathing ability. Realistically, a long-term goal is to have her only needing it while she sleeps. Her facial paralysis means that she can’t use her face to show emotion – she can’t smile, for example – so she has a permanent serious-surprised expression, but when those interacting with her know this and adjust to it (something that takes a bit of practice) they realise that she is actually a lively kid with a well-developed sense of fun.
Or whatever struck in her brain last year may strike again; leaving her with new handicaps, or even killing her …
What happened to
Fatima was a reminder to us that the children we are caring for are very ill and that the chances that any of them can quickly turn critical and even die are continually there. And that it’s advisable never to forget that.
So I’m thinking about the continual tightrope walk that nursing chronically very sick children entails. Theoretically, to do your job properly and to be able to continue to do it well, you know that you have to keep a certain amount of professional distance, otherwise you’re not going to be able to stand it. But children have a way of undermining that distance, instinctively throwing out nets festooned with lots of clever, sharp hooks which snag in your heart and make you into a willing captive. And you can’t afford to really resist them, because the only basis on which you can build a real relationship to these little people is genuine empathy and, yes, love.
Therefore, there’s only one thing you can do; carry on squaring the circle. Realistically, it’s probably not the sort of work most of us can do full-time indefinitely.
Not without an awful lot of support, help, encouragement and continual self-reflection anyway. Which is why I’ve decided to start training next year as a clinical supervisor. It will qualify me to continue to make a contribution in this whole area, while at the same time opening new personal and professional perspectives. And while the training is going on (and probably for some time afterwards, at least part-time), I’ll be continuing to work in this area – I’ve still got to pay the bills and get through life. At fifty plus, I anticipate it being a bit of a challenge, but I’m confident enough of my ability to rise to it.
And if I need any inspiration, I need look no farther than Jenny. Now there’s someone really rising to a challenge …
Pictures retrieved from: