Goodbye Malawi

As I head home, I am spending time reflecting on my time in Malawi and some of the things I have learnt. 

This is one of the poorest countries in the world and this is evident in many ways, not least in terms of the healthcare system. The team in QECH, Blantyre are doing amazing work but there is a limit to what they can achieve within their minimal financial resources. 

Children born with cerebral palsy or other long term conditions have a profoundly different life than they would back in the UK.  There is no community nursing back up, no access to feeding support such as gastrostomies or even long term nasogastric tubes. If children are unable to take full feeds orally, they will not get enough.  One of the children I met on the malnutrition ward was a 9 year old with cerebral palsy. He weighed 10kg, the weight of a 1 year old at home. His wasting and stunted growth were upsetting to see. He was on the ward for one of his regular admissions for nasogastric feeding because he is unable to maintain adequate nutrition orally at home. His suck and swallow reflex is just not up to the job.  The child's mother was gently trying to coax him to take some feed off a spoon, in the hope that he would be able to go home soon. I could hear that he was having trouble swallowing it and was acutely aware that he was heading for another episode of pneumonia caused by aspirating food into his lungs. Nonetheless, his mother persevered gently, uncomplainingly, lovingly. What other choice does she have?

Malawi Day 7: Life, and death

There are five patients in resus this morning. Two of them came in half an hour or so ago and were barely conscious. They're all receiving treatment and undergoing investigations. Four of them are sharing trolleys and oxygen concentrators.

I step outside the room for a few moments to talk to the lead Paediatric ED consultant. She's an inspirational lady who has an enormous amount of experience in this setting and in the UK. She's talking about raising funds to expand the department, in particular to provide more space in the resuscitation room. She is acutely aware of the lack of space and privacy and the fact that children and families witness things they should not see. Overcrowding is the big issue.

As if to underline this point, a car arrives outside and the driver rushes in asking for a trolley. We go out to the car to see a child of about 12 years slumped on the back seat. His mother is crying inconsolably as she cradles his head in her lap.  He is unresponsive as he's lifted onto the trolley. I tilt his head to open his airway and I look for signs of breathing. For any sign of life. I put my fingers where his brachial pulse should be. It's not there. The consultant checks his pupils. They're fixed and dilated.

A few sentences exchanged with the family as we run inside tell us that this child was taken to a health centre in one of the districts this morning after repeated vomiting and several fits as they thought he had cerebral malaria. He was sent here for further treatment and stopped breathing on the way.

Malawi Day 6: Privacy and dignity. Challenging myself

I've seen some things during the week in Malawi that have really challenged me and made me think about the concept of privacy and dignity. 

A couple of days ago I spent the afternoon in the resuscitation room. I talked previously about the child with the snake bite. Also in the tiny room at the time were two other patients: a 4 year old child with cerebral malaria and a 12 year old girl carried in by several members of her family. She appeared to be unresponsive and was slumped in their arms, not supporting her own weight. 

There were reports of her having been beaten and whipped by a teenage boy. It became clear that she was not actually unresponsive, but completely shut down emotionally. Not looking at anyone, not talking, closing herself off from the outside world. Examination by the doctor revealed a swollen tummy. Glances were exchanged. The collective concern unspoken. Pregnant? At twelve? Could this really be true? I take myself back to that moment and relive the wave of emotion, the feeling of the stone in my stomach. I think of my twelve year old daughter at home. But I can't draw those parallels, not if I'm going to get through the day. 

The team are trying to get the child to talk, to tell them what happened so that they can help. She remains silent and this is taken to be a response to stress, to emotional trauma. 

I look around the room. The child with the snake bite is desperately unwell and it's critical to be able to measure her fluid balance. To this end, she needs a urinary catheter inserted. The child with malaria has become a bit more aware of his surroundings after some oxygen and IV fluid and is, by turns, screaming inconsolably and looking around. 

My colleague and I decide that our presence is likely to hinder the twelve year old feeling comfortable enough to talk and we leave the room. 

The community area, hospital grounds

As we get outside, I contemplate what I've just witnessed. Three children with highly concerning presentations all together in one room. No privacy. No visual or audio separation. It feels so wrong. It's the opposite of everything we strive for at home. The tears come then for a minute. I'm just unable to feel ok about it. The team rally. We've all had a hard day. Witnessed things we weren't ready for. There's understanding, a bit of reflection at our daily debrief, and then a bit of laughter and silliness over dinner. It's how we cope in healthcare and we're having to pull out all the coping strategies now. 

Later, I reflect (over what's app) on what I have seen with a friend who's spent a lot of time in this part of the world. Gently, he challenges me to think about the fact that I am applying my Western European ideals to an entirely different context.  Maybe this lack of privacy is something that exists in every aspect of life for people here. Maybe it's ok and actually a source of support. 

Over the next few days I notice more about the feeling of community and the support that the mums on the ward give each other. Babies and children often share beds as there just aren't enough of them. Mothers are by their sides constantly. If they need to leave the ward at all, one of the other mothers temporarily takes responsibility. Food is shared, tacit emotional support given. When they witness other children receiving attention, or if one is severely unwell or dying, their looks are of compassion and concern, never nosiness. 

On the odd occasion a whole bed becomes vacant, no one ever asks to take it. There is support and solidarity in the closeness. I think about the difference  between here and home; the clamour for cubicles and the privacy this provides.  Maybe we've got it all wrong. 

Privacy and dignity is often discussed in healthcare in the UK. It's as if one can't exist without the other, as if it's a box to be ticked. It even appears on quality checklists: Is privacy and dignity maintained?  This is a question that always bothers me, and I know it will even more now. 

Here, privacy is in short supply, but dignity is abundant. At home we are all over privacy but can we say the same of dignity?

Malawi day 5: Finite resources. Difficult decisions.

I'm looking at a child with a swollen, rigid tummy. He can't bear anyone to touch it, and he's semi-conscious. He's in the resuscitation room, having been brought in by one of the Land Rover "ambulances" that drive around the more remote districts once or twice a day picking up people who need to come to hospital. There's no triage or priority system associated with this: it makes a number of stops and then comes to the hospital. People may walk for miles, carrying their child, to get to the ambulance stop and then endure the journey to hospital, deteriorating all the way. 

The land rovers then drop everyone at the door to the emergency department. This may result in multiple patients arriving all at once (the intended passenger numbers of the vehicle are irrelevant). At home this would likely be classed as a major incident. Here the team just get on with it. 

One of the doctors makes an assessment. It's clear that the child will need an operation. Right now, he needs stabilisation. IV fluid, probably a blood transfusion, oxygen. The nasal cannulae are applied to deliver oxygen from the free standing concentrators on the floor. There is no piped oxygen like at home. These run off electricity and concentrate oxygen from room air. At this moment the power goes off. No electricity and therefore no oxygen. This added to the fact that we've had no running water for three days now.  

We wait for the other generator to kick in. It doesn't. 

Malawi Day 3: Snake Bite!

The Children's Emergency Department in Blantyre sees around 90,000 patients per year. Around half of those come through the resuscitation room. This room, the focal point of the department, is about the size of a large living room and houses 3 trolleys and a few stools. I'm told the record number of patients in this room at any one time is 17.  I arrive to a conservative 3 patients. Two are being treated for respiratory conditions. The other is a nine year old who has been bitten by a snake. 





From the doorway I can see how swollen her leg is, with several large blisters and peeling skin. The wounds from the snake bite on her foot are obvious and the child is barely conscious. 





The team are taking the history. There are considerations I would never have thought of: how did the snake behave? Was it daylight or darkness? These factors will give clues about what sort of snake it was and the likely prognosis. There is no anti venom whatsoever in Malawi, so the truth is that this may guide the way the family are prepared for what to expect. The snake struck at night and wrapped itself around the child's leg before biting. Based on this the team thinks it's likely to be a puff adder. Not a black mamba, they say; she'd be dead already. 





The story unfolds and we hear that this happened 48 hours ago. I'm shocked. How could the family have done nothing for 2 days? They didn't do nothing though: they took her to see a witch doctor who gave her local Mankwala - a black ashy looking substance rubbed in patches on her legs.  The team point out the characteristic "tattoos" left by this substance. There is great belief among the local population in witch doctors, but the team report that this black Mankwala is highly toxic. Sometimes it is used as a topical application and sometimes given orally. Either way, the effect can be devastating. 


Malawi Day 2: The malnutrition ward

My brain can't compute what I'm seeing. I'm looking at what appears to be a two month old baby who is sitting upright without support. 





The ward round begins and it's clear that, underneath several layers of oversized clothing, this is a 13 month old baby who is the size of a 2 or 3 month old infant. She was abandoned at 3 weeks of age and never fed properly. Taken in by members of the extended family who did their best, she was fed formula milk, but clearly not enough. In a country where resources are limited, we know that babies on formula often do not get regular feeds and the milk may be overly diluted or made with unclean water.  





The result is severe malnutrition and stunting of her growth. This baby weighs a mere 4.9kg. I regularly see babies of 3 or 4 months of age weighing that much at home. The all-important measurement of mid upper arm circumference (MUAC) is 9.5cm. Severe acute malnutrition is defined as having a MUAC under 11.5cm. If I made a ring with my index finger and thumb I could encircle both her upper arms. 





Not for the first or last time that day I feel a surge of emotion. I'm close to tears for a moment. I take a deep breath and compose myself. I would hate this child's caregiver to feel worse because she thought I was worried. We focus on feeding regimes and I learn about high calorie milk based feed and the comically named Plumpy Nut paste. This is an example of a RUTF (Ready-to-use Therapeutic Food). This, like any other area of medicine, is a world of acronyms. In simple terms this is a sachet of peanut  paste which is very high calorie and well tolerated (it tastes like peanut butter - why wouldn't it be?!).  Interestingly this area of the world does not see peanut allergy, or really any allergy at all for that matter and this momentarily gives me pause for thought about our increasingly allergic population at home.  The good news is that this baby has gained weight in the few days she's been on the ward. If her gut can cope with the transition from high calorie milk to Plumpy Nut, she will be ready for discharge. In the meantime she sits on the bed, still and quiet but keeping constant watch, and I can't help but wonder what those eyes have seen in her short life.  





As is so often the case in my work, we see patients for a brief period in their life, we may get to know a little about how their story began but we hardly ever get to know the ending.  I hope that the wonderful team at Queen Elizabeth Hospital have been able to give this little girl a new start that will lead to a better future.

Malawi Day 1: The adventure begins

To learn about delivering healthcare in a resource limited setting. That's the main objective of this training course in Blantyre, Malawi. I joked about this before I left home: "I work in the NHS; I know all about limited resources!". Little did I know. 





I was going to say my senses were assaulted on arrival to the hospital. That's not quite true. What happened was much gentler. Overwhelmed, yes, but not assaulted. 





Walking through the corridors of crumbling concrete, corrugated iron roofs and peeling paint is like nowhere I've ever been. Looking out the windows into the various courtyards I see lines and lines of colourful African print fabric drying in the sunshine, families sitting chatting, meals being shared, children playing. There are people everywhere but it's calm. There's a certain tranquility that defies the crowds. 





I discover later that these people outside are waiting patiently for the next visiting time so that they can tend to their loved ones, change sheets, provide a meal. The fab
ric is the clean laundry, ready for the next bed change.




Through a maze of corridors and walkways, we find the paediatric unit and are welcomed by our host as a couple of chickens cluck outside the open window. 





We're divided into pairs and my buddy and I are dispatched to the neonatal unit where we are met by a clinical officer.  This is not a role I know, but during the course of the day I learn that the unit could not survive without him. There is little he doesn't know about caring for these tiny, vulnerable infants. We join him on the first ward round of the day. 





I'm aware of a row of wooden boxes on legs lined up against the wall, and it takes me a moment to realise that these are where the babies are nursed.  On closer inspection, I see that these boxes are specially made cots with rows of light bulbs under the mattress to provide heat to these little babies. I comment on the ingenuity of these bespoke cribs and am told "we just use locally available materials".  They're making do and it really works. The babies are warm and cosy in brightly coloured traditional fabrics. 





As the round progresses, we see two babies who are both HIV and syphilis positive. Now I'm outside the comfort zone. I haven't seen a patient with syphilis before and I listen as our clinical officer patiently explains the treatment plan. Blood cultures, antibiotics and feeding support. To this end, the mothers are admitted to the ward every 2-3 hours to feed their baby and they do this with great equanimity, either from the breast or via a nasogastric tube. There are some chairs but not enough and some of them settle onto the floor with the baby on their lap. Once feeding is done, they leave the ward and the babies sleep. 





The ward round progresses and we see babies with jaundice. Treatment plans are discussed. I look around for phototherapy lamps and notice a small wooden box with multiple LEDs embedded in it. Again, this is something made using the available resources to meet a need. It's rested on the Perspex cot cover while the baby's eyes are covered with a bandage to protect from the bright light. 





Babies are reviewed and moved to the Kangaroo Care area, where babies are nursed skin-to-skin with their mothers before being ready for discharge. A couple of babies are discharged and a plan made for "bench review". Is this a new medical term? It's not something I've heard of. It becomes clear as our next stop is the bench. It's a seating area outside the ward where babies are reviewed daily or weekly to check progress. There's not really an appointment but mothers wait their turn patiently. And this epitomises the feel of the whole place. There is waiting, there is hoping and there is making do. All the while there is acceptance and there is calm.

Difficult emotions: are nurses allowed to feel angry?

I’m looking at the body of a child who should not be dead.  Pure and simple.  This was absolutely avoidable.  He wasn't born with some sort of devastating genetic condition, he didn’t suffer a cot death, nor was he struck down by an infection so serious his system couldn’t fight it off.

“What the hell were you thinking?  Why would you take that risk?” is what the mother in me wants to say to the parents of this beautiful 18 month old who has just drowned while left alone in the paddling pool.

His mother left him alone while she went inside.  She says she left him for two minutes.  We don’t know how long it was but when she came back outside she found her baby floating lifeless in the water.  

An ambulance was called and arrived within minutes.  Resuscitation was started immediately and continued on the journey to hospital.  We were waiting to receive him.

The nurse in me puts aside my personal feelings as we work on him for 40 minutes, acutely aware that with every passing second his chances of surviving unscathed are diminishing.  Now is the time to rely on policy and procedure, not to give way to emotions and feelings.  My colleague, the resuscitation team leader with the weight of the world on his shoulders, asks if any of us believed there is anything else to be tried.  I look around the room at a group of professionals who know that we have done everything we could and are still reluctant to admit it’s not enough.  

The child’s father is in the room as we agree to stop trying to resuscitate his son and I encourage him to hold the child’s hand.  We haven’t been able to persuade the mother to come into the room but I can hear her sobs from outside as she sits with a colleague.  I have a strong feeling that she should be in here.  I know from evidence and from experience that parents are better able to accept the loss of a child if they have witnessed the resuscitation attempt.  Whatever the circumstances, this is a mother who has lost a child, something no parent should have to endure.  

Afterwards I sit with the child’s father as he holds his dead son.  He is inconsolable as I would expect him to be.  He talks to the child and tells him to wake up, he calls his name and strokes his cheek.  I feel a wave of emotion that I can’t quite define; a mix of compassion, and dread about how to respond, maybe something else I can’t put my finger on.

I tell him I’m sorry but he can't hear you, he’s dead.  I know that I need to avoid euphemisms: ‘passed away’ won’t do, it might be misinterpreted, but ‘dead’ feels unbearably harsh.  A new wave of realisation hits the father and grief washes over him again.  He’s rocking and crying, asking God for strength, for a miracle.  He asks me how will he get over this and I draw on my own experience of losing a loved one and tell him ‘you won’t get over it, but you’ll find a way to live with it’.  I have no idea whether these words comfort him, but he is quieter for a moment and holds his son a bit closer.

In my professional capacity, my role is to provide the best possible care during the resuscitation attempt according to evidence and protocols, and then to make death the best it can be, all the time suspending judgement and leaving my personal feelings aside.  This is a fine balance: I can only be a good nurse if I give enough of myself to feel compassion and empathy, but sometimes my core values and beliefs are challenged by the choices people make and the actions they take and that creates inner conflict for me.  This is the human side of healthcare and this is why my job is hugely demanding as well as being wonderfully rewarding.

In the hours that follow, the safeguarding team and police are involved, as they are for any unexpected child death.  Questions are asked and investigations begun.  This may be recorded as a tragic accident.  Or there may be enough concern from the various professionals involved that a child protection case is opened by Children’s Services.  Maybe the police will decide to prosecute.  

For now, I reflect on the case myself and I lose sleep over it.  One of my colleagues comments that we’ve all done things we regret as parents, taken risks that we probably shouldn’t have.  But have we taken risks like this?

I try to make sense of it.  Is it like co-sleeping with a tiny baby even though the advice is not to bring them into your bed?  Is it like allowing a toddler to run a little too far ahead of you on the pavement?  Is it like allowing a child to play with toys he’s not quite old enough for and might choke on?  Not leaving children alone near water is a basic rule of parenting.  Everyone knows that, don’t they? 

I can’t feel ok about this.  Not as a nurse or as a mother.  I cannot accept that this chance was worth taking.  Not for two minutes.  Not for two seconds.  The risk was just too great.  I talk it though with a colleague and he names the emotion for me:  I am angry.  I am so angry with this child’s mother for allowing this to happen, for allowing this senseless loss of life.  

This one will stay with me for a long time.  I don’t know what the ending will be for this child’s parents.  I do know that life will never be the same for them.  As a nurse I want answers for this child, to be able to make sense of this senseless loss somehow.  As a mother I can barely allow my mind to go there.  As a nurse and a mother I am often seen as a problem-solver or a fixer, but this is something that can't be fixed.