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Childhood diabetes in a setting of poverty and poor access to healthcare

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Raising a child with a chronic disease is difficult for anyone. There are places where the intersection between harsh geographical conditions, abject poverty, ignorance and lack of basic infrastructure make it an impossible mission.

“I didn’t think things could get worse until she started getting weak, complaining about frequent thirst and hunger in a place where both are in very short supply. Water and food! In this our desolate backwoods, you don’t want your child in tears asking for food and water. You can’t bear it. Look around you and tell me if this place was designed to provide food and water. Tell me where you’d get that for a child who wants, no needs it now. I hear out there in your world children cry for fanciful things like electronic toys and such. And that’s what stresses the parents. The basics stress us. Any caring father in this dry land will be driven into madness by the cries of his hungry children. It can compel you to steal, even murder. That underlies the security problems we have here. Food, water, and security are intimately linked. It is a terrifying prospect to have a child who is always hungry and thirsty. It can push you to the edge. You resort to spanking your child to make her stop. You think she is a naughty child.
“It didn’t take long for things to go from bad to worse. At first, she would be irritable and lethargic, not wanting to play with the others. She seemed to sleep too much. Then I found her unresponsive one morning. It was a scary thing. Was my child too hungry to wake up? I thought about giving her some sugar; maybe it was the hunger she had complained about before going to bed. And she woke up. Later that morning, while playing outside, she collapsed. I panicked. Something had to be wrong. Very wrong.
“I took her and started running in the general direction of the hospital. It was terrible. You see, just two years earlier I had lost my wife on this very route trying to get her to the hospital. She had been in labor for many hours. by the time I got home, she was bleeding badly. My neighbor and I loaded her onto my bicycle for the long trip to the hospital. As we struggled along the path, dodging the rocks and thorns, her screams faded into whimpering. Just as we reached the main road, she collapsed.
“I was on the same route again, the same predicament, my baby, limp in my arms, death smiling down on me. I was lucky this time. Someone passing by on a motorbike loaded us onto it and technically flew over the rough surface we have as a road. It was rough. In this my first experience of motorized mobility, it seemed like the scariest thing ever, threatening to fling us out as it dodged rocks and thorns. The hard work of navigating the cattle tracks we have in place of roads was a terrifying affair, even for a father trying to save his daughter. How, so suddenly, the things we lacked, those amenities of modern life I cared little about, became essential. I had always been content with life in the bush. It is all I have ever known. It is a painful way to be made aware of how much you lack. I wished there was a hospital here, a road by which to access it.
“When we finally reached the hospital, I thought she was dead. I thank the doctor’s quick actions, which saved my daughter. I remember remorsefully how I made life difficult for the doctor. At the time, with all the stress and fear, I didn’t appreciate the questions and the lengthy talk I had to endure. The questions were too many.
“Was there anybody with diabetes in the family? Had she been diabetic? Had she used insulin before? Was she on any medication? How old was she?
“What were those they were asking? What bearing did they have on anything I cared about?”
“I didn’t care about answering. I just paced up and down, gripped by the kind of dread only a parent about to lose a child would understand. I drove the first doctor into frustration, and she left. Another doctor who spoke my language took over, managing with no pretense at diplomacy to squeeze out information from me and lecture me about so many things.
“The blood sugar was very high. What did we eat at home? This was diabetes type 1…. She would need to inject herself with… with something for the rest of her life…!
Oh, my God!
Sugar? Injections; three times, four times daily? The rest of her life? What was going on? What was this?
Everything they said sounded strange and very ominous.
“It has been tough to put it simply. We have nothing here. It is hard enough dealing with the problems of basic survival. On top of that, a problem of this magnitude is thrust upon you. Surely, even hell cannot be worse than this. Any small mistake means she is gone. It is terrifying. As a parent, you live on the edge. The hospital is very far, and we have to go there very often.
“It is challenging to manage a child with diabetes because you can’t tell a child what or when to eat. It’s not that easy, especially when food is scarce and what is available is the type of food they tell us not to eat. The wrong diet, that’s all we have known all our lives. Even that is hard to find. This bad food is what we can afford at the shops. The forbidden food, the killer carbohydrates, that’s what even the NGOs bring as relief food. A child will eat anything wherever and whenever they find it, especially in a place where food is in such short supply. It is no way to control diabetes.
“Think about having to inject a child so many times a day. Even the mention of a needle is terror to any child. It never gets easy. She cannot yet understand why she has to suffer so.
“They give us the insulin, but that’s the start of the problem. It must be stored in a fridge; if only I knew what that is. I try to hide it under the cupboard or under the bed, you know, where you think it is cooler because it is dark, away from the direct sunlight. But that’s also where the rats and snakes play, and things get damaged. Plus it’s not even cooler. Insulin perishes quickly here. When we go to the hospital for more, they get angry because I am not doing my best. What can I do, I wonder? I am supposed to store it in a charcoal cooler as an alternative. Look around you, all the way to the horizon and tell me where you’d get charcoal. This is a desolate country, devoid of trees and hostile to life. Frankly is no place for anyone with such an expensive disease.
“I have come to accept my predicament, to make peace with the fact that my child will not live long. It hurts, to think that under different circumstances, in a different place, she would live a normal life. There is the guilt of not being able to save your child. A caring parent can never get over the fact that you failed to do what your child needed to survive. There is the shame of poverty. To be poor is bad enough, to be poor and sick is a different story. It is a different story because it is not life at all. The helplessness never lets you breathe easy”.

Author’s note

A country doctor must always contend with problems that are often beyond him or her. It is something those in the city may find hard to understand because here, we practice conventional medicine. Neither the doctor nor the patient cares too much about life outside the hospital where their interaction occurs.

For those of us who have ventured out into the country, it becomes clear that the reality outside of that hospital is the greatest determinant of everything you do. It is the cause of the patient’s problems to begin with. Poverty and poor infrastructure conspire to make you, quite literally, useless to the people you are supposed to serve. Poverty and poor access ensures that by the time people go to the hospital, it is too late. For a woman who has been bleeding for hours during a complicated delivery, you can do nothing. For a man who arrives long after a stabbing, a work-related injury or any other trauma, it is often too late. Any emergency reaches you much too late for intervention. And God forbid if ever you need blood for transfusion.

For chronic diseases, the first problem is that the patient gets to you only when complications have set in. Secondly, illiteracy makes it difficult to establish the therapeutic relationship necessary to impact this person’s management. And even if you could, you simply cannot change much. Your rural hospital will likely have nothing to help you confirm diagnosis and certainly doesn’t have any of the essential medicines the patient needs. You send them for a test they will never do. You write a prescription for a medicine which they will never find or could never afford. What really, is the meaning of your presence there?

This is one of the questions many doctors face. It leads most of them, most of us, back to the city where we can at least feel we are actually doctors. It sounds to many people like a callous action on the part of the doctors. But it is a matter of self-preservation. Doctors in Kenya have long had a tenuous relationship with the state which has even worsened with the counties. No one would listen to you if you asked for more equipment and supplies for your hospital. You certainly cannot influence the expansion of infrastructure. The expectation is that doctors should sacrifice themselves for the benefit of the community. But how do you benefit them when everything else is against you.

But the doctor’s problems are nothing in comparison with those of the community. The constellation of factors highlighted in this story faces millions of people in this country. They contribute to high and often undocumented child mortality rate and for those who survive to adulthood, a life that is brutal and very short. It is not possible to fully comprehend the reality of this nasty existence unless you experience it. As a doctor coming from the city, there is an initial shock. You come face to face with a reality which makes everything you have heard and read–in conferences, in the media, on policy documents etc–seem both sanitized and hypocritical.

Perhaps it is time the real truth sinks into our consciousness. It should be known to all without efforts to sanitize it. And this plain truth should inform a move toward sincere efforts to improve the lives of people in the neglected backwoods of our nation.

“When you live here, you can’t fear death. It’s your only hope of rescue from a painful existence.”

J Kalekye

 Join the healthcare conversation by writing to perspectives@tiirahealth.com

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