The End of Day One, and More

I jump ahead in my chronicle to exactly one week after I admitted the eight month old with the abdominal tumor. It was the beginning of my second week at the clinic. I was in the middle of another busy morning, when I was interrupted by a clinic security guard. He informed me that a very ill four year old girl had just been brought into the clinic.

The girl was carried into my office by her mother. It was clear that she had lost the ability to not only walk, but even stand. It was easy to see why. Her arms and legs looked to be no bigger around than my finger. She was skeletal. I could not see how she was still alive. But how had she gotten like this? How had she been reduced to no more than skin and bones? The answer came the moment that her mother removed her dress. I had been shocked at the appearance of the 8 month old with the abdominal tumor. This 4 year old child took “shock” to a new level.

I have used the word “shocking” and “appalling” many times in my blog posts, perhaps so many times that those words have lost their impact. Those words do not do justice to this poor, little girl. Her abdomen ballooned out on the left side, like she had swallowed some large, but irregular object.

I palpated her abdomen, and felt the outlines of an enormous mass. It was a mass that extended across the entire abdomen, and all the way around to her mid-back. The mass had the same ominous rock hard consistency as the mass in the eight month old child’s abdomen. This mass, like the other child’s mass, was a malignant tumor. It could not have been anything else. Maybe it was a neuroblastoma, or maybe a Wilm’s Tumor (arising from the kidney and also known as a nephroblastoma). It mattered not at all what kind of tumor it was. What did matter was that the tumor was a death sentence for this four year old child. I show you below a picture of this child. The picture, graphic as it may be, is self-explanatory.

I have been in pediatric practice twenty-eight years. I have seen, in those twenty-eight years, exactly two children with malignant abdominal tumors: one was a child with a neuroblastoma, the other a hepatoblastoma. Both children were young at the time of presentation (less than 18 months). Both children had the benefit of the best cancer treatment available anywhere. Both children received potent chemotherapy after surgery to prevent further recurrence of the tumor. Both children were diagnosed before the cancer had become incurable. Both children had the good fortune to be born in the United States. Both children had access to one of the finest children’s hospital in the world: Children’s Hospital of Los Angeles. Best of all, both children have been cured of their respective cancers. I use the word “cure,” because it is more than five years that they have finished their courses of treatment. They have no sign of recurrence of disease, and it is a given that they will not. They are normal, healthy children, each of them going to school, each of them with a life ahead of untold promise and potential.

Do I need to contrast those two children in my practice at home with the two Burundian children with abdominal tumors? I think not, for it is enough to say that these two Burundian children have no hope. It is enough to say that, even if these tumors had been diagnosed at an earlier stage, there would be no treatment for these children. It is enough to say that these two children had the misfortune to be born in Burundi. Life is over, or soon will be over for both of them. These are lives cut obscenely short by the capricious hand of fate.

One question I ask myself: how do I explain the dichotomy between two abdominal cancers in twenty-eight years at home, and two in one week in Burundi? Is this simply a statistical oddity that requires no explanation? Yes, it probably is, but there may also be a partial explanation. Our clinic in Kigutu often serves as the last, best hope for sick patients. They come here because they have exhausted every other form of treatment. They come here because they have heard that this is where people come to get better; because they believe that we have the ability to cure that which is incurable.

The clinic then serves as the ultimate tertiary care center. This is the end of the line for medical care in Burundi. There is the capital city of Bujumbura, with its university medical school and medical center, and with the limited number of Burundian medical specialists. Yes, they can do things in that capital city of Bujumbura that we cannot do here. Yet, I believe that our clinic here in remote Kigutu has an almost magical hold on the people of Burundi. They have faith in this clinic, even when that faith has no basis in reality. There are many times, though, when their faith in the clinic is rewarded.

We do not perform miracles here. However, we do provide quality medical care, and that is often all that is needed. Unfortunately, finding quality medical care in Burundi is like finding the proverbial needle in a haystack. Our clinic is that needle. The needle grows metaphorically bigger as time goes by, and the clinic’s reputation spreads to all corners of this small, impoverished nation.

The clinic serves as a beacon of light in the tunnel of darkness that is medical care in Burundi. It was that beacon that attracted those two families with their children suffering from life-threatening diseases. Perhaps then it was no surprise then that two separate children should come into the clinic exactly one week apart. Where else could they go?

Back to this poor four year old girl. Her story was as follows: she had started to develop abdominal distension approximately nine months prior to her arrival at our clinic. Her mother had done what one would expect a Burundian mother to do. She had, like the previous child with the abdominal tumor, taken her to the mupfumu. He had not performed “nettoyage de la bouche,” like the other mupfumu. Rather, he had performed another time-honored mupfumu technique: scarification. He had made multiple shallow vertical and horizontal incisions over her abdomen. He then applied traditional herbal medicine to the area, and given the child herbal medicine to drink. The child went to the same mupfumu for the same procedures multiple times. It was only when the mother realized, after many months had passed, that these techniques were not working that she sought out real medical advice.

She traveled a long way from her home, ending up eventually at the hospital in Rumonge, a provincial city not too far from the clinic. She saw a doctor there. He briefly examined the child, and told the mother that her daughter had a kidney tumor. He then said that there was nothing that he could do; that she should take her child home, essentially to die.

The mother had heard of our clinic; heard that we can do things that other doctors in Burundi cannot do. She carried the child on her back up the hill that goes to the clinic. It is a steep uphill climb that must have taken her at least three or four hours. I knew, the moment I saw that child, that there was nothing I could do for her, but I still admitted her to the hospital. I did so for two reasons: one, for nutritional support, and two, for counseling regarding the child’s condition.

I sent this child home a few days later. I knew that I was sending her home to die. I knew that her mother would carry her down the mountain with the extra burden of knowing that the child strapped to her back would not survive much longer. I knew that I had done nothing for this child. Yet I also knew that I had done everything possible that I could do.

I have learned to accept the limitations of life in Burundi. I have come face-to-face with those limitations more this year than I have in past years. I have seen and admitted more patients this year for whom I could do little or even nothing. Yet for every child that I could not help this year, there have been countless others that I have helped. The medical defeats that I have incurred, like the two children with the abdominal tumors, are heartbreaking; made even more heartbreaking because they are children. Yet all the doctors here, myself included, soldier on, knowing that behind one of our defeats lies many victories on our Burundian medical battlefield; a battlefield that goes by the name of the Village Health Works.

I now return to finish the saga of my first day at the clinic. It was late afternoon, and I had just admitted the eight month old with the abdominal tumor. That was my fourth admission of the day. I was rapidly filling the ward with my patients. A mother and her two year old child were ushered into my office. I took one look at the child, and that one look was enough to tell me that she was severely malnourished.

There are degrees of severe malnutrition, just as there are degrees of malnutrition. This two year old was in the most severe category. I have subsequently seen worse; much worse, in fact. But, for a child of two years old, she was very bad. She had a combination of Kwashiokor (protein deficiency) and Marasmus (complete caloric deficiency). Her muscle mass was virtually non-existent. There were merely layers of skin covering her brittle bones. Her abdomen was swollen and fluid-filled, as were her feet. She had no strength, no force. She sat in her mother’s arms, crying weakly as I examined her. This picture of her is enough to make my words superfluous:

Her mother was also noticeably thin. It was, therefore, not surprising when it turned out that both mother and child were HIV positive. They had not previously been tested. It will take much longer than usual for this child’s malnutrition to improve. There are two reasons for this: 1) she was significantly worse than most of the patients I admit to the malnutrition ward; 2) the HIV children simply take longer to get better.

This child has now been started on the anti-retroviral (ARV’s) regimen that will be a lifetime commitment for her. Her mother is aware of that lifetime commitment. Her mother, on the other hand, will not start ARV’s until she shows clinical evidence of the disease, or when her CD-4 count drops below 250.

It is estimated that the incidence of HIV in the general population of Burundi is 3%. It is similarly estimated that the incidence of HIV in our clinic patients is 6%. Both of those figures are estimates. The figures may be significantly higher, for there are many HIV positive men and women out there who have not been tested. Men, in particular, are reluctant to get tested. The men and women should be tested, because safe sex is not a concept that has caught on here. In addition, the men often have multiple partners.

The little girl has now been on the ward three weeks. It took many days, but, clinically, she is finally showing improvement. She is showing more energy. Her edema has resolved. She is now eating Plumpy-Nut, the peanut-based paste that comes in a plastic wrapper. She will go home soon with a month’s supply of Plumpy-Nut. She will then return to the clinic on a monthly basis for a refill on her ARV’s, and more nutritional supplementation. One can only hope that the combination of the two will prevent a relapse of her malnutrition.

The last patient of my first day was a six year old boy who was carried in by his mother, because he could not walk. He had a fever of 40.3 degrees (almost 105), and a rigidly stiff neck. He responded only to painful stimuli, and there was a question whether his right eye reacted to light.  

There was no doubt that the boy had bacterial meningitis. We did not do a spinal tap, because we do not have the equipment to do a spinal tap on a child. We also do not have the ability to do a culture on the spinal fluid. Therefore, a spinal tap was superfluous. We knew what the boy had, and we knew, theoretically, what antibiotic needed to be given and at what dose: Ceftriaxone at a dose of 75-100 mg/kg. We gave the Ceftriaxone within minutes of the child arriving in my office.

The child ultimately recovered, although it took him several days to regain his strength. We think that he may have suffered a hearing loss as a result of the meningitis. We do not know how profound a hearing loss that. He has gone home, but we do not know what kind of damage he has suffered as a result of the meningitis.

I mention this story because bacterial meningitis has become a rarity in the United States. It is not a rarity in Burundi. There was already a nine month old recovering from meningitis on the ward. That child fortunately did well, and seemed to have no complications from her meningitis.

So why is meningitis so rare in the United States and so much more common in Burundi? I think you know the answer. It is a one word answer: vaccinations. Our vaccinations have virtually eliminated bacterial meningitis. Perhaps those who have reservations about vaccines should visit a world in which vaccinations are not se readily available. That world includes Burundi. They have a limited number of vaccines here, but the government makes a determined effort to give those limited vaccines to as many children as possible. There are vaccination days, in which all the children in the area come to a chosen place to get their vaccines. We had one such day at the clinic today. Children and families lined up en masse to get their shots.

Strangely enough, I did not hear any talk today of the dangers of vaccines, nor did any patients want to use an alternative vaccine schedule. They all want as many vaccines as we can give them. We should count ourselves lucky that we no longer face the scourge of the diseases that we prevent with the plethora of vaccines that we have; diseases like the life-threatening cases of meningitis that I have seen here.

I have now completed my saga of my first day at the clinic; it was a day that I shall never forget. But it is now time to move on. I do not want to leave you with the somber and serious stories I have related. Rather, let us all enjoy through the world of my pictures, the happy times in Kigutu.


A woman at the clinic, waiting to be seen:

Five women at the clinic waiting to be seen:

And, finally, my new best friend, Lisiski. The first two pictures are of Lisiki after her most recent hair washes. The last one is her last day here. Her grandmother was discharged yesterday, and so Lisiki has gone home. She insisted, on that last day, that I either carry her or walk with her holding hands. I, of course, obliged. She had become the little mother to the other children on the ward. She was teaching one nine month old boy how to walk. He would have none of it. Then, she brought some of the other children on the ward into my office so that they too could get one of the little toys I dispense to my patients.