Tag Archives: poverty

Blood: It’s complicated

An anxious mother stumbles into the clinic, carrying a fragile bundle wrapped in blankets and a faded kitenge. The baby boy – perhaps younger than one year of age – is breathing heavily and seems frighteningly pale for an African child. The MH triage nurse takes one look at the child and ushers them towards Maranatha’s version of an ICU, although it has none of the machines and gadgets one would find in an ICU in the west. As fast as can happen in a Ugandan setting, with a culture of people who cannot be rushed, the child is examined by a clinical officer, is cannulated, tested for their blood type, and then (with relief) the lab staff report that they have some blood available from the child’s blood group. The clinical staff let out the breath they were unaware of collectively holding, and everyone carries on doing the work that needs to be done.

In peak malaria season, this scenario may happen a few times a day. A common complication of severe malaria – especially in children – is anaemia.

I’m not a clinician. But basically, in this context, where severe malaria is really common, regular access to donated blood is essential. At MH, we sometimes transfuse several units of blood every day. Blood transfusion for these children is powerfully and phenomenally life-saving.

So, blood is important.

It is also frustratingly difficult to get our hands on sometimes.

The other day we had a call from Bundibugyo, a neighbouring district 60kms away. A child that had been taken to a hospital there needed a transfusion, and was extremely sick. Before the parents traveled, they decided to call ahead to the regional referral hospital, which is also in Fort Portal. They did not have blood. They then called another big hospital here, a Catholic hospital, which also had no blood. Then they called Maranatha. Our lab tech quickly checked the fridge and to our great relief, there was 1 unit of blood left, and it was the blood type of the boy. We told them to come. A rare win!

Every few months, MH invites the blood bank in FP to do a blood drive at the MH clinic, and we try to get as many units as possible donated. It’s quite a community day, actually, and fun.

The blood banks across Uganda, including the one in Fort Portal, were funded in part by some significant donors. But the donors have recently pulled out, and most of their funding is now from the Ministry of Health. With two old vehicles, and a small team of staff, they are expected to find enough units of blood to service about 8 districts – probably more than 5 million people. The blood bank is now expected to find this blood – miraculously – with no budget for transport and reduced staffing levels.   There are some pretty substantial challenges beyond the obvious time and resource constraints: there is not a culture or awareness in the general community around blood donation; there is no social pressure or reward for donation; with the majority of people poor farmers, people do not have time or resources to commute to give blood regularly; and with HIV (and other STDs) the highest in this region of Uganda, there is a substantial amount of blood that simply cannot be used, even if collected.

This epic wall of barriers to donation culminates in the variety of stressful situations we often have at MH, where there is just

Not. Enough. Blood.

When we are busy at MH, often our lab tech will find himself down at the blood bank a few times a week, begging for another unit. He will call the staff with the keenness of a 15 year old girl having her first crush, racing to the blood bank the moment there is a rumour of a few already screened life-saving-units ready to go. He knows all of the staff there by name. In emergencies, when there is really nothing left to do, we will send family there to donate and then wait around while the blood is tested and bring it back to MH. Of course, it was much more difficult in Kamwenge days, when collecting blood from the Fort Portal blood bank sometimes felt like an episode of the amazing race. We needed to send an esky with a public taxi from Kamwenge, with the request for blood signed by a certain MH staff. After bargaining on the price of this ‘service’, the taxi driver would take the esky to a supermarket in fort Portal town that had agreed to store a few icepacks for us, and then take it to the blood bank. Someone from the blood bank would pack the units for us (once they were available) and then organise another taxi driver to take the units back to Kamwenge, often tied on the roof of the vehicle. Once it arrived at the taxi park in Kamwenge, we would get a phone-call and go and pick it up, normally in a desperate rush knowing there was a child on the very precipice of life itself.

Basically, in a word association game, if someone mentions blood and Uganda, my immediate thoughts go to frantic phone conversations, empty fridges, the oxymoron of pale-black-children, and our shabby red esky that has been thrown into the work ute ready to collect blood from the bank on about a million occasions. Then comes to mind the afore-mentioned pale-black children’s chubby legs running around the ward a day-or-two later, defying the odds of the malaria gods by being an under-5-Ugandan-patient brimming with life.

The government referral hospital does not have the same record of transfusion as MH though. Their not-so-reliable transfusion record has been the focus of many a Ugandan’s frustration. To offer some context, the public health system in Uganda is broken. Staff often simply aren’t there, equipment is broken, drugs are often not available or shifted to ‘private pharmacy’s’ within the hospital, bribes are the norm, rooms are extremely overcrowded, health staff have low morale and some simply don’t care….

In this scenario, one can imagine there is much that could go wrong when a patient is in need of a blood transfusion. The stories that I have heard when quizzing friends and our own staff about their experiences when in need of blood are numerous and horrific: clinic staff demanding payment for blood, blood expiring in the fridge while people wait in the wards in need, patients being sent to private pharmacies in town to purchase the basic equipment lacking to give blood, unqualified staff overseeing the process or staff unavailable so the blood is never transfused…

All of these issues are of course irrelevant when there is almost no blood available, and so much demand, as has been the case in the past few months.

A few weeks ago, one of the Ugandan newspapers published a story reporting that recently at the Fort Portal referral hospital, 8 people died in ONE DAY due to a lack of blood. This, understandably, created a political storm of sorts, so much so that the Ministry of Health sent some high-ranking officials in expensive suits with shiny cars to Fort Portal to find out what indeed happened. Trying to understand what the problem is, so that it can be fixed.

But there are no easy solutions.

I wish there was.

The solution is for people to be free of poverty

The solution is for the government health system not to be broken.

The solution is for the Ministry of Health to take seriously their mandate to provide basic services to the population, and to be held accountable to this by an educated, politically engaged population.

The solution is for malaria to not be endemic in this population and take tens of thousands of children’s lives every year

The solution is for people to come to the health service earlier before they become anaemic, confident in the knowledge they will be looked after well.

The solution is for the culture of blood donation in the community to be changed

The solution is for more funding and greater resources and better systems and services

It’s one of the most all-consuming realities that I have experienced and have been forced to eventually embrace (kicking and screaming) while working in the developing world.

The frustration of discovering that poverty and disadvantage is complicated. And systemic. And cultural. And contextual. And economic. And political. And relational.

It’s just plain hard.

Blood is a beautifully tragic example of this.

If anyone tells me about an ‘easy’ or ‘simple’ solution to poverty and disadvantage these days, in any context, I smile. I listen. Then I politely disagree.

The fluke of geography

Due to a fluke of geography

I was born into a society that taught me I could do anything.

I was born in a country that places a high priority on all children having access to a reasonable standard of education, that offers social and financial support to those who can’t find work, and that gives government loans for university, and only makes you pay them back once you can afford to!

I was reflecting on this the other day, after an interesting conversation with a friend in Fort Portal. This friend has a low-end job, comes from a poor background, and will probably never move beyond these circumstances.

We were discussing the fact that David, my son, is currently obsessed with motorbikes. I was joking that I hope he doesn’t become a boda-boda driver when he is older (a motorbike taxi – an extremely ‘low end’ job with little prospects which often comes with a lifestyle of women and alcohol).

My friend reminded me that David is an extremely stubborn, head strong little boy, and will do whatever  it is he wants to do…no matter what I want for him!

I sighed, and agreed.

He then nostalgically described his primary school days, a time when he thought he could become whatever he wanted in his heart to be. He remembered his peers saying they wanted to be pilots, doctors, engineers, teachers. He shook his head and clicked his tongue in disgust at their naivety.

I asked him what he wanted to be, back then.

He hesitated, obviously embarrassed to share this with me. Quietly he spoke: ‘a doctor’. Following this, was a sort of half-laugh-half-sigh.

He continued…

‘you know, that was never going to happen. As a child, I didn’t realise. But Africa has a way of separating people – there are those that can manage, and those that can’t. ‘

I sympathetically agreed, listing all the hurdles with him – having to work and study at the same time, trying to find school fees, going to a government school where teachers don’t turn up for days so your grades suffer, trying to get into university – but not being able to afford the fees and bribes nor knowing the right people…

He explained that he could barely manage to finish S4 (year 10) because of school fees, and needing to help his family in their garden. By the time he finished, he was offered a job, and took it. Now, he said, ‘its fine – you manage what you can, and try to enjoy life’.

Then I offered thoughtfully ‘you would’ve made a good doctor’.

But in my mind I was thinking – this life is so UNFAIR.

Because I didn’t want to become a doctor, not in a million years. But I am pretty sure that if I really wanted to, and worked hard towards that goal, I could’ve managed.

I explained to my friend that I felt very lucky – almost guilty – that I had the opportunities I had purely because I was born in Australia. That even though neither of my parents finished high school (but went on to technical college), even very few people in my extended family have gone on to do further study, even though I went to reasonable but not amazing schools…I still easily managed to get into university.

It was easy to get a place, because there were so many places and so many courses and so many universities. It was easy to get the grades, because I had good teachers who cared about me and knew how to teach – which is mostly the norm in Australia. It was easy to afford, because the government paid for my course at the time, and I only had to pay for text books, which wasn’t much of a stretch even on my part-time salary whilst living out of home.

And that about sums it up.

The ease of it all.

Obviously there are children in Australia that face an up-hill battle to get an education, that don’t grow up in safe and loving homes, and that struggle for survival in a variety of ways.

But the majority find it easy.

Not because they are deserving

Not because they are so much more hard working

Not because they possess some gift or intelligence the rest of the world doesn’t

But because of the fluke of geography.

Pushing bananas up a hill...

Pushing bananas up a hill… (photo by Matt Curtis)

A matter of life and death

When I was a teenager, my mother, in her infinite wisdom and patience, often needed to remind me that the issue I was tearing my hair out over ‘wasn’t a matter of life and death’. I was –and still am – a sensitive person, and often experience life quite dramatically and intensely. Just talk to any of my closest friends/family and they will agree wholeheartedly (though I hope they will also tell you that it is part of what makes me driven, empathetic and very passionate!).

Sometimes now when I get stressed in my daily work, I wish my mum was sitting beside me rather than back in Australia. I wish she could sigh, give me a hug, and tell me that what I am dealing with is not ‘a matter of life and death’, that there are bigger picture issues that I could be worried about, and that everything will be ok.

The problem is, these days, some of the issues I lose sleep over at night ARE about life and death. Not in some idealistic, save-the-world kind of way.

But a lot of times in situations I am confronted with I honestly don’t know what the right action is – if it exists at all – but I do know that my decision has serious consequences for other’s lives.

I want to tell you a story that I lost a lot of sleep over, late last year. I wanted to share it earlier, but the words and thoughts were jumbled until now (I have a little time at the moment to ponder things…). I couldn’t decipher the message behind the story until now.

My community team (the three of us) were in the village having a meeting. We commented that there were less people than we had expected. A woman casually responded by explaining some members had gone to visit the family of the boy that was ‘about to die’. After gathering more information, we found out the boy was around 10 years of age, he had a heart problem, had recently been to MH where he had improved, was discharged, but after a month had become much worse.

After the meeting, we went to the household of the child. The sun was already dropping below the horizon, casting shadows on the narrow dirt track that led to the remotest area of the village. It was clear on arrival that the family were very poor. In one glance, I took in the dilapidated mud hut, the lack of shoes on the scuffed feet of the family, and the countless number of children looking on with curious faces. I heard the boy before I saw him, the short gasps and long groans of someone on the edge of death –sounds that I’ve become a little more familiar with since working at a clinic in Africa. After introducing ourselves, we found the boy inside the hut, and as my eyes adjusted to the dim light that seeped in through the cracks in the mud, I saw him lying on a faded woven mat spread out on the dirt floor. It was a horrifying sight. A fragile 10 year old body, his eyes squeezed shut in fear, with an abdomen the size of a woman carrying a full term baby.  Something was very wrong.

I called Michael immediately and described what I saw. He told me to bring the child, and explained that if I didn’t the child would probably die that night.

We talked to the parents. The father reluctantly agreed to take the child by motorbike. The mother, however, refused. She wanted to keep him in the hut. She did not want him to leave, to go to a clinic, to spend further money. He had already been to the clinic, after all, and we had not fixed him. She was ready for him to leave this earth, and it took the MH community staff 10 minutes of fast talking Rukiga, and the promise of free transport and treatment, to convince her to allow the boy to come to MH.

By the time we left the village on the bikes it was dark. Once I reached home almost an hour later, Michael went up to the clinic and worked on the boy for a few hours, stabilising him for the night. When Michael arrived home, we talked in bed for a long time about the boy, about his situation, and about the mother who refused medical care for her child. I was angry and confused by the mother’s reaction, and shaken by the experience of seeing a scared young child so close to death with so few around him that were ready to fight for his life.

Arnold then spent 2 weeks on the MH ward with his father, improving as much as he could in his condition; he was in right heart failure and what he needed was an operation – a valve replacement – that cannot be performed in Uganda. We heard that an NGO (Samaritan’s Purse), often arrange and pay for heart operations in India for children like Arnold, but that they only identify those children at Mulago, the national referral hospital in Kampala. Samaritans Purse would be at Mulago the next Tuesday. So we decided it would be a good idea to send Arnold and another little girl diagnosed with a similar (but not as urgent) condition to Mulago.

This is where it became super difficult, and why all of a sudden the self-righteous judgement I had for the mother’s seemingly cruel reaction seemed to fade fatalistically away…

The families had essentially no money with them, and sending them to Mulago would be an expensive task so we asked the district health department to help us. After many promised vehicles, fuel and funds, they were not able to help.  We enquired about the two shiny white ambulances that were given to the district earlier that year by another NGO. We were told that these ambulances were only to be used to transport women with obstetric complications, an incredibly ridiculous condition imposed by American donors, which improves only one small area of the health system.

Eventually (after days of waiting) we decided to use public means, painstakingly arranging every detail so the families wouldn’t fail to reach the hospital. After 7 hours on bus, a friend of a staff member met them at the bus stop in Kampala at 8pm, and took them to Mulago. After this long journey, they found themselves at the cardiology centre, armed with test results and referral letters from MH.  They were greeted by a nurse who explained the doctors had left for the day and therefore they could not be admitted – they would have to leave. After some negotiation with MH staff over the phone (whilst dreading a long night in the rain, sleeping in the carpark of Mulago), they were sent to the casualty ward for possible admission there. The doctor on duty took one look at Arnold (who was looking increasingly sicker from the long journey) and sent him back to the cardiology ward, after a call to the on-call cardiologist demanding he admit them both.

Between the four of them (2 children, 2 guardians) they were given 1 bed. The next day they were told to pay money for a consultation or leave. They used the little money they were given from us, for the consultation. Although they already had test results from MH and it was clear that both were in need of significant help, the treating cardiologist demanded they both pay to have another echocardiogram done. Despite Arnold’s showing a failing heart with a large blood clot in one of the chambers, and the young girls showing a heart in end stage failure, he reported that they were both fine and should be discharged. A script was written for each of them but as they had no money left, they were not given any drugs at this government health facility. This was despite the fact that the young girl who travelled with Arnold had been seen by a visiting cardiologist from the MH Australia Board, Prof Prash Sanders, who found the girl to be in severe heart failure and in need of a valve replacement.

The children were, therefore, discharged before the Samaritan’s Purse workers could even see them, and not knowing what else to do, they found their way onto a bus back to Kamwenge. Upon arrival back in Kamwenge, they came to the MH clinic, grateful for our assistance, but disappointed that their children had not been helped. We treated them with what we could at the clinic, gave more free medication and instructions to return, then sent them home. The parents of the children were astonished at our generosity, and our belief that at some point we could help those children.

In February, on returning to Maranatha, my staff informed me the boy, Arnold, had died in his home.

Some of our staff attended the burial.

 

This story isn’t meant to make you feel sad or helpless.

This is not just a story about a boy dying of heart disease. It is not a story about uncaring parents. It is not a story about the need for funds to offer heart surgery in Uganda. It is not a story about a young white girl with too much idealism.

It is a story about how the poor lack opportunities, lack services, lack choice, lack voice. Not because those services and opportunities don’t exist, but because the poor are again and again denied access to them by virtue of being poor.

Arnold’s story paints perfectly the synergy of fatalism and poverty.

Immediately on hearing the boy had died in his home, in the same state I had found him, I cursed myself for pressuring him to come to the clinic in the first place, so that he would be forced to suffer through the same experience twice.

But I mulled over that thought. It sat very heavy and uncomfortably on my spirit. If I surrender to the deep fatalism of my fellow Kamwengians, how could transformation come?  Jesus came to this earth and offered life to the full despite the suffering he saw around him.

So I promised myself I would not also become fatalistic. Realistic, when necessary, but never fatalistic. No matter how many children I find like Arnold, and no matter how many I fail to help, I always want my first reaction to be one of optimism and a desire for this world to be different.