Day 1 (continued)

     Malnutrition is primarily a disease of the young. Children, especially those between the ages of one and six years, are the most commonly afflicted. Yet that does not mean that adults are immune from the blight that is malnutrition. Many times, the adult form of malnutrition is secondary to various disease processes, like malignancy. But there are times when adult malnutrition exists as a primary entity on its very own. Take, for example, this woman pictured below. I don’t know if you can tell from the picture, but this woman has a certain grace and elegance, and even beauty about her that belies her nutritional status.

     Her story is as follows: she is a twenty year old woman admitted to the hospital because she had a severe cough for two or three weeks, and she was malnourished. She was probably 5’5”, or maybe even 5’6”, and weighed 29 kilos (about 65 pounds). Put the two together in Burundi: prolonged cough and malnutrition, and the obvious answer is tuberculosis. However, she was initially treated for pneumonia with Amoxicillin. Surprisingly, she improved rapidly on the Amoxicillin, making the diagnosis of tuberculosis far less likely. But how then to explain her malnutrition? Unfortunately, simple answer: she was too poor to buy food. She had been able to scavenge perhaps one meal a day, and that was it. Now you know why she weighed 65 pounds on admission. Hopefully, we can provide her with nutritional supplements before we send her home. That hope is by no means a certainty; nor is it a certainty that, even if we provide those nutritional supplements, she will have the means to buy food once those nutritional supplements are depleted. This woman’s story is a sad, but by no means unusual Burundian story.

     I return now to the story of my first day at the clinic this year. I had seemingly finished my clinic responsibilities that day. All of the pediatric patients had been seen. I had admitted three of them, the other twenty had been sent home with various types of medication. It had been a long day, but I was done, or should have been done anyway. It was unusual for patients to come to the clinic in the afternoon or evening. Virtually all the patients to be seen on a given day were there in the morning, waiting to be seen. They had all lined up behind the chain that separated the clinic from the Burundian world around it.

I headed back to my room for a short period of rest and relaxation prior to dinner. I never made it to the room, for I was immediately called back. Three more patients had just come into the clinic. Each of those patients would turn out to be memorable.

      The first patient that afternoon was an eight month old girl. I could see, even before I got my first full look at her, that this was a child in trouble. The mother carried her in the same way that one might carry a priceless Ming vase; that the baby would break, just like the vase, if she did not exercise extreme caution in handling her.

The mother gently placed her on the examining table, and unwrapped her. There was nothing to this child. Her reed-like arms and legs were offset by a massively swollen abdomen. I was accustomed to seeing abdomens swollen from the edema associated with malnutrition. But this was a different abdomen than one swollen with fluid. There was something seriously wrong here, something far worse than malnutrition, something that was ominous in its presentation. The baby was certainly malnourished; severely malnourished, in fact. But the abdomen told the real story.

     It was in the abdomen that the problem would be revealed. I gently palpated that swollen abdomen, and immediately felt the sharp outlines of a rock-hard solid mass, which appeared to emanate from the liver. It extended, in a horizontal direction, almost all the way across the abdomen, and, in a vertical direction, to just above the right hip. This was an eight month old girl who had a mass in her abdomen that was bigger than a grapefruit; a mass that could only portend disaster.

     I show you below a picture of this 8 month old child. You can see the marked abdominal enlargement. You can also see a small swelling just above her left leg. This is an inguinal hernia. My presumption is that the abdominal mass was so large and exerted so much pressure on her abdomen that it forced part of her intestines to herniate through her abdominal wall.

    

     The girl’s story was as follows: the mother noticed increasing abdominal swelling over the past two months. The child had, during that time, gradually lost more and more weight. Her feedings decreased, and she was unaccountably irritable. The mother, in an attempt to improve the child’s condition, did what the vast majority of Burundian mothers do in these situations: she took her to the mupfumu (the traditional healer). The mupfumu did the kind of thing that mupfumus do: he performed on her a “nettoyage de la bouche,” which literally means “cleansing of the mouth.” The “nettoyage” consisted of the mupfumu scraping a rather sharp instrument against the back of the baby’s throat. He did this without using sterile, or perhaps even clean instruments. Neither did he wear gloves during the procedure. His scraping, not surprisingly, caused the baby to bleed profusely from the mouth. The bleeding eventually stopped, but not before the mupfumu declared his “nettoyage” to be a success. He told the mother that the fact that the baby bled so much was a good prognostic sign.  

     The baby continued to deteriorate, and the mother then decided to seek the help of an actual doctor. She came to us for that actual doctor. I knew immediately what we were dealing with here, but we did an ultrasound to confirm my suspicions. The ultrasound showed a large, solid mass that occupied almost the entire abdomen.

     There was no doubt that this eight month old baby had a malignant abdominal tumor. It was probably an hepatoblastoma (a tumor originating in the liver) or perhaps a neuroblastoma (a tumor that can originate anywhere in the abdomen). It did not matter what kind of tumor it was. The point is that it was a malignant tumor, already in an advanced stage. There was no hope for this eight month old child. None. Zero. She was going to die, probably within a few, short months.

There was no treatment for her in Burundi. There was, in fact, no treatment for any kind of cancer in Burundi. Chemotherapy does not exist in Burundi. But what about surgery? Could this child’s tumor have been removed surgically? Would that have not given her at least a chance of survival, and perhaps even cure? Should we not give the child that chance, infinitesimal as that chance may have been? We were, after all, dealing with an eight month old baby. Should we not, as doctors, do everything in our power for her? Should we not expend every ounce of energy that we had, explore every avenue to search for a cure for her? The answer to all these questions is the same: no.

I have learned over my many months in Burundi a valuable lesson in medical ethics. That lesson can be summed up in one word: acceptance. I have learned to accept that which I cannot change. I have learned to accept that we, as doctors, have our limitations; that we cannot cure everything; that we can only do what we are capable of doing; that we doctors are not gods, that we cannot work miracles; that there are patients that cannot be saved, and diseases that cannot be treated; and that sometimes, perhaps even many times, we have neither the answers nor the solutions. Nowhere is the concept of acceptance more relevant than in Burundi. It is here that we have such finite medical resources, both diagnostic and therapeutic. It is here that we are forced to confront our limitations on a daily basis. It is here that I have come face-to-face with the concept that there are many times when I can do no more, that I have done “enough.”

That concept was brought home so poignantly last year with a patient of mine by the name of Honorine. She was a five year old with a brain tumor: a brain tumor that, had she lived in the United States, would have been curable with surgery. Such surgery, like many other medical resources, does not exist here in Burundi. I could only give her steroids to reduce the swelling that the tumor had caused in her brain. The steroids made her more comfortable, but, of course, the relief was only temporary. I eventually had to send her home, knowing that I had sent her home to die.

Dr. Melino was in Bujumbura when the 8 month old with the abdominal tumor came into the hospital, and I sent him an e-mail describing her. This is his response (the little girl to whom he refers is Honorine):

“That is very bad! This reminds me the little girl with a brain tumor last year who came to see you with a CT scan, I don't think she still alive!”

            I agree with his assessment: Honorine is probably not alive. There was nothing I could have done to change that equation. It is unbearably sad, but it is also the way of the world, as the world exists in Burundi. I did, as a doctor, what I was capable of doing, given the limitations of being a doctor here. It was not enough, but it was all that I could do.

     I believe that the concept of “enough” does not exist in the American medical system, at least, not to the extent that it should. We are, too often, unable to say “stop!” We cannot accept that we have done all that can be done; we believe that we can always do more. There will always be one more test to run, one more drug to give, one more life-saving maneuver to perform.

We have almost unlimited medical resources at home; perhaps it is that surfeit of resources that enables us to continue treatment when continuing that treatment has become pointless. Perhaps it is the American can-do mindset that requires us to never give up, even when giving up is the humane and logical thing to do. We would do better to sometimes follow the dictum of acceptance. We need to learn that we will not win every medical battle; that we should accept the medical defeats that are an inherent part of our job. We should still strive with every fiber in our being to treat and, hopefully, cure our patients. But we must also understand that, even with all the powers and the resources that we have, there is sometimes a limit to what we can do.

We also need to realize that the world outside our boundaries is not the same as inside our boundaries; that most of the world does not have the means to do what we can do at home. I cite as an example the following e-mail from an oncologist at a prominent Children’s Hospital. He was responding to my query last year as to whether anything could be done for Honorine and her brain tumor.

“This child's best hope is to go to Cape Town, Johannesburg or Durban for resection of the tumor -that is all that is needed.”

I suppose that, in his mind, he was correct. Yet he might as well have said, “the child’s best hope is to go to the moon-that is all that is needed.” Honorine’s family had nothing, and they were not going anywhere, much less South Africa.

The family of my eight month old with the abdominal tumor similarly had nothing. They also were not going anywhere with their child. But what if they did have the means to go to the United States for the surgery needed to remove that tumor? It would not have mattered, because this child’s tumor was far beyond the stage where surgery would have made a difference; far beyond the stage where even the combination of surgery and chemotherapy would have made a difference. There was no hope for this child.

This mother had walked into my office with her eight month old baby, knowing that there was something seriously wrong with her baby. She could not have known how serious that wrong would be. I knew immediately. I knew at the same time that we had nothing to offer this mother, nothing that would have made the slightest difference in the baby’s outcome. What could I do at that point? What could I say? Nothing. I admitted the baby for the treatment of malnutrition. That treatment would not make any difference in the end result, but it would give the baby much-needed calories. It would also give us time to counsel the mother. She would then learn of her daughter’s fate. Would she rail against that fate? Probably not. She would almost certainly take the news with the stoicism that is typical of Burundian mothers.

I leave off my saga of my first clinic day. I have said enough for now. However, I want to leave you on a high note. Therefore, I post below more pictures of my life here in Kigutu.


These are pictures of my new best friend. She is a two and a half year old girl by the name of Lisiki. Her grandmother is in the hospital, and her mother is here to take care of the grandmother. Lisiki comes up to me every time she sees me on the ward. Then, I carry her in my arms while we finish rounds. She is adorable, and generally has a serious face.

 Eight month old twin boys, breast-feeding, African style. The one on the right was admitted for malaria and pneumonia. He was fine in a couple of days, and discharged home after three days on the ward.

   

Lastly, these are pictures from primary school and secondary school classes in the village where Clairia lives. I served briefly as the substitute English teacher in these classes, while we waited for Clairia and her parents to come back up the hill with nurse Achel. To each class, I said, "good afternoon", and all the students, with their beautiful voices, came back in unison, "Good Afternoon!" Some of the students look old. That's because they are old. The way it works here: one does not pass onto the next academic level until one passes the previous level. A student may, therefore, be stuck in the same level for several years. The first picture is the primary school, and the second, the secondary school.