Fieldset
A patient clearly as stubborn as I am

Johanna is managing the newborn ward in our hospital in Agok. She shares the story of a young patient with a strong spirit...

One of the quirks of the neonatal unit is that our admission criteria, as well as being any unwell baby less than two-months-old, also includes any person infected with tetanus — no matter their age. 

When it was first explained to me before I got here that I could expect to care for fully grown adults in my baby unit I was confused, and the explanation that this was because the neonatal unit was the quietest place in the hospital didn't make sense to me either.

I presumed the neonatal unit would be noisy with babies crying all the time, but actually that's not the case. Most of my babies are so small that when they do cry, which isn't often, it sounds more like a kitten mewing. But still, the prospect of caring for a critically unwell grown-up was strange for me as a paediatric nurse anyway, but the thought of doing so alongside teeny-tiny babies seemed downright odd. 

Strong enough to snap bones

In the end my first encounter with a tetanus patient didn't turn out to be a fully grown adult, but a small five-year-old boy. I had never seen someone with tetanus before (as most people in the UK are lucky enough to be vaccinated against it) but I had read about its horror.

Patients are gripped with violent and incredibly painful muscle spasms that cause them to grimace and contort. Since it is not only the voluntary muscles that are affected but also the involuntary ones, the normal processes of breathing and swallowing can be disrupted, with the potential for the patient to drown in their own saliva.

The muscle spasms can be strong enough to snap the bones, with the spine being particularly vulnerable, surrounded as it is by the powerful back muscles. As if all this wasn't horrific enough, the worst thing about it is that despite the fact that to an outward observer the patient may appear to be having a convulsion, they will remain conscious throughout.  

Dark and quiet

The boy and his mother were transferred to us and immediately installed in one corner of the ward, in a tent hastily constructed by the logisticians out of blankets. This is because even the slightest stimuli can trigger an episode of spasms so we try to keep tetanus patients in as dark and quiet a place as possible.

Unfortunately, in this setting, living in a tent made of thick woollen blankets is horrific in itself, when the outside temperature is around 40 degrees you can just imagine how hellish it is inside. 

The first time I approached the tent I was nervous about what I would find. I pulled back the blanket just enough to squeeze myself inside, cautious not to let in any more light or sound than was necessary. I was instantly assailed by the furnace-like heat, and the smell of sweat, urine and fear.

With a click the boy's mother turned on a small torch so that we were dimly illuminated and as my eyes adjusted to the dark my fears of what I would find were confirmed.

Spasm

Before me lay a small boy. His terrified eyes watched every move I made, but the rest of him was stiff, with his back arched and his hands balled into fists. His mouth was frozen in a joker-like grin and his jaw was tightly clenched. As he saw me approach he tried to get away but he was unable, and anyway, there was nowhere to go. He began to cry, or scream. It was hard to tell, as whatever sound he was intending to make was distorted into a gargling, choking noise as his head jerked backwards over and over.

I was very aware that to this small boy, despite my best intentions, I was not a comforting figure. I knew that the medications I had with me - powerful painkillers and a muscle relaxant - would hopefully ease his suffering, but I had no way of communicating that to him. To this terrified five-year-old I was another pale stranger, come to stick needles or do mean, inexplicable things.

I was so shaken after my first visit I asked the C.O. if there was any hope for the boy, because what I had seen did not inspire any confidence in me that he would make it. The answer I received was noncommittal - he had cared for four tetanus patients before, two had survived and two had died. We would just have to do our best, and hope, and wait and see.

Superhuman feats

The first few days were tough in terms of nursing care. This little boy required treatment almost every hour which is difficult enough when you have many small babies to care for at the same time. Not to mention the stress of knowing that the vital medications you are giving him can have the side effect of respiratory depression (meaning they can slow and — worst case scenario — stop your breathing). This would be stressful enough if he was attached to a monitor in a place I could see him, but here we had no monitor, and he was at the back of the ward hidden by thick blanket walls. I just had to have faith that should anything go wrong when I wasn't there his mother would notice, and tell me, and hope that it would be in time.

Unfortunately the first few days also did nothing to dispel his fear of me and the team. Unlike our babies this boy was big enough to make his resistance felt when he didn't want something, but still too young to understand that everything we were doing was in his best interests. Nasogastric tubes, intravenous cannulas — all got ripped out in superhuman feats of determination to coordinate his disobedient muscles. I was impressed with his will power, but distressed that every time he succeeded in removing the offending item, it just meant another harrowing and exhausting attempt to replace it.

With time though, he did seem to be improving. The episodes of full body spasms, although still horrifying, did seem to be becoming slightly less frequent. And his jaw had loosened enough that he was able to report his complaints to his mother in just-about-intelligible words. After a few days we had to give up on the nasogastric tubes, they only ever lasted a short time before he succeeded in pulling them out, and his mother kept giving him milk behind our backs because he said he was hungry. It was just a matter of luck that no ill-timed spasm sent that milk directly into his lungs, so in the end we compromised — no more tubes or milk, just thick nutritionally enhanced paste that she could feed him slowly and stop at the first sign of a problem. It wasn't ideal, but somehow it worked.

After seven days he was improved enough that his mum decided to give him a bath. I fetched the plastic baby bath and we added a small amount of soapy water. We placed it on the floor by the entrance to the tent and she gingerly helped him out. He managed to slowly bend his knees enough that he could be lowered into the bottom of the bath but his back and neck were still so stiff he wasn't able to bend them at all.

The poor little thing sat there looking like a cross between a b-movie zombie and a robot, arms sticking out, back straight, the very picture of discomfort. For the other mothers on the ward it was the first time they'd actually seen this little boy that had been the centre of so much attention (and the creator of so much noise), but along with their curious stares and whispers of intrigue they also offered encouragement and support for his first venture out of the darkness.

The next day he came out of the tent again, and spent a few hours lying on the vacant bed next to his. His spasms had really reduced by that point but he was still incredibly stiff. The extra stimuli of being outside didn't seem to affect him anymore so the day after that we finally took down the blanket tent. I was very glad to see the back of it, and even more delighted that its removal signified we had come through the worst of his illness.

As much as I love my babies, the thing I really miss about working as a paediatric (as opposed to neonatal) nurse is the interaction with the children. High fives, peek-a-boo, silly games, are all tools of my trade, and none are effectively employed on a neonatal ward. Now I had a five-year-old who was no longer in critical condition I was poised to play, play, play — but he still hadn't forgiven me for our previous interactions. Put simply, he did NOT want to be my friend.

I was determined to win him over. His mother and I got on well so I knew she was putting in a good word for me, but he was steadfast in his mistrust. When I brought him the things I knew he liked — sweet, syrupy medications and his food paste — he would grudgingly take them from me (a vast improvement from cowering away) but would look at me defiantly as if to say: “this changes nothing.” I liked him all the more for it. He was clearly as stubborn as I am.

Despite the way I've described it, this wasn't an entirely self-indulgent exercise on my part. Children learn and develop through play and I was well aware this little boy had been sick for a long time with an illness that could potentially impact his cognitive development. What's more we still weren't sure what the long term effects of his illness would be, not only mentally but physically — what he really needed at this point was to begin loosening those stiff inflexible joints, and what better way to do this than by playing? The final part of my rational was social, for a five-year-old to be only surrounded by adults and babies must be incredibly lonely and boring with no toys or books or games to pass the time.

I went on a charm offensive. Every morning on ward round I'd create something different for him to play with — which wasn't particularly easy considering we're not exactly overflowing with resources. The first day I made an elephant out of an inflated glove, the next day a Simpson-esque face out of the same thing. Both times he watched what I was doing with intense curiosity but then shied away when I presented them to him. The first day I left the elephant on his bed and walked away, only to see him pounce on it in the reflection of the window as soon as my back was turned. On the second day he carefully took the face out of my hands, but refused to look at me as he did so. I was gratified to watch him play with them both for the rest of the day.

We suffered a minor setback on the third day — I arrived on the ward and was excited to see him happily shaking something small that was creating almost musical noise. I couldn't work out what it was and he refused to show me, scowling as he hastily hid it behind his back. I decided to leave it alone, and was happy that he'd been resourceful enough to create his own plaything. It only dawned on me later, as the third member of staff approached me to complain that the stapler wasn't working, that what he was shaking was the small plastic container I'd recycled to store our staples in. It crossed my mind to feign ignorance and leave him to it but I quickly realised that the system of keeping our medical records would grind to a halt without staples, what's more, by this point my assistants had also realised what it was he was playing with and were not impressed with the misuse of our materials.

Now that they knew what it was I couldn't be seen to be complicit in such wastage and I knew his mother would scold him for taking what wasn't his, so I quickly found a similar container and mimed for him to swap his with mine. I was satisfied that he now trusted me enough to do this, but realised that this warming of relations would be short lived when he realised that the one I'd given him didn't make any noise. He didn't complain however — I think he knew he would have been in trouble for taking them in the first place — and 'staple-gate' was narrowly avoided.

The next day I was racking my brain trying to think of something new to make him. In the end I recreated the glove-face I'd made a few days earlier but this time I found some scrap paper that I rolled and folded and taped to create a stick person style body. This caused great amusement among the mothers of the ward, particularly as it turned out to be almost as big as the boy in the end. By this point he was strong enough to walk around, but his legs were so stiff that he looked like an ill-at-ease soldier (or someone from Monty Python!). As he jerked around the ward with his new toy clutched in one hand the glove-face bounced around to and fro and I couldn't help feeling immense joy that we had made it this far — a million miles from our first meeting in the tent, and all those days filled with stress and worry that he'd choke or stop breathing.

The day after that it was time to say goodbye. He was still quite stiff, but by that point we were no longer giving him any medications — his body would continue to repair itself as best it could but there was no reason to keep him away from home (and his mother away from her other children) any longer.

As I sat at my desk completing some of his transfer paperwork I felt a presence by my side. Without any sharp movements I turned my head and sure enough there he was, only inches from my elbow watching curiously as I wrote. It was the first time he had ever willingly come so close to me. Still moving slowly I pushed a pen and a piece of scrap paper to the side of the table and nodded encouragingly as he grasped the pen with his stiff fingers and began to make marks on the paper. After a few minutes he let me help him into a chair next to me, and we spent a companionable half an hour, side by side, both engrossed in what we were doing.

Several visitors to the ward joked that I'd found a new 'assistant' to help with paperwork, and his mother was happy that he was entertained while she gathered their things together before the long journey home. I don't know whether he understood that he was leaving that day, or if he was simply feeling better and was no longer scared that I'd do something mean. Either way, I'm very glad that we spent that time together; a chance to put the unpleasantness of the past aside and to recognise that it had all worked out well in the end.

This blog post appears on Everyday Emergency, the MSF podcast

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