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.