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.

An appeal

An Appeal for Clairia

    

     Clairia and her mother arrived at the clinic yesterday. All seems to be in readiness for her life-saving surgery in Israel. There are some logistical issues to work out from this end, but none that should prevent her from going.

     I wish that was all that I had to say. I wish that I did not have to make this appeal. I wish that I did not have to draw from the money well one more time. However much I might wish it, I still have to turn to all of you once again for help.

     SACH and MKI have been extremely generous in their support. They have agreed to cover the entire cost of Clairia’s surgery and subsequent stay in Israel. However, we still need $4,000 to cover travel expenses, as well as various other minor expenses for Clairia and her mother.

     I do not like to ask for money for one Burundian child when so many other Burundian children need so much help. I do so this time, because Clairia’s is a special case. Two organizations have already supplied the vast majority of funds needed to perform the surgery that will give Clairia a normal life. I now turn to all of you to provide the rest of the funds for that normal life to happen.

     I know that I am asking a lot from you. I also know that you have given a lot in the past. So many of you gave so much at the Village Health Works benefit in November. You should be proud of yourselves for that support. I have seen first hand what your money did for the clinic here in Kigutu. I have seen the modernization of the facilities; modernization that was long overdue. It was your support and your money that helped make that modernization possible. It is no exaggeration to say that your money has saved lives here at the clinic; lives that would otherwise be lost. It would amaze you how such little money goes such a long way here in helping the legions of Burundians that need your help.

I know what you have done in the past, and now I am asking you to do it in the present. I am asking you this time to give for one person: an adorable little girl who needs this surgery, who deserves this surgery. Let us be the ones who make it possible. Let us be the ones who will give Clairia the life that should be her birthright; the life that would be her birthright if she had been born in the United States.

Any donation that you give for Clairia is a valuable donation. Give whatever you can. Give $25, $50, $100, or whatever you are capable of giving. Your donations will add up quickly. Perhaps we will even surpass the $4,000 mark that is needed for Clairia. If that does happen, your money may then go towards the next “Clairia:” the next Burundian child who needs life-saving heart surgery. Have no doubt that there will be such Burundian children in the future.

You can make that much-needed donation by clicking on the following link:

https://salsa3.salsalabs.com/o/50467/p/salsa/donation/common/public/?donate_page_KEY=7984

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.

Clairia

Many of you are familiar with the story of Clairia, some are not. Whether you are familiar or not, I give you some background to today’s events. Clairia was seven months old when I admitted her to the hospital last year for severe malnutrition. I was the first doctor to ever examine Clairia, and, therefore, I was the one fated to discover that she had a major heart murmur. The nature of that heart murmur was ultimately delineated: Clairia had a large ventricular septal defect (VSD), and pulmonary stenosis. Clairia would die at a young age from worsening heart failure if her congenital heart disease was not repaired; however, she would lead a normal life if it was repaired. It was as simple as that.

     Cardiac surgery does not exist in Burundi. Therefore, Clairia would have to go elsewhere. It was through the efforts of several people and two organizations that this  “elsewhere” was found. That elsewhere was a place called Israel. There is an organization in Israel called SACH (Save A Child’s Heart). This organization brings children to Israel for surgery they could not get at home. SACH agreed to bring Clairia to Israel for her surgery. That was not the end of the story. More funding was necessary. That funding was provided by an organization based in Los Angeles called Mending Kids International (MKI).

     Clairia could now go where no Burundian child had gone before her: to have heart surgery. The plan was for her mother to accompany her to Israel, and the two of them would stay in Israel for four months. All seemed to be set. Her mother seemed to be on board with the plan. That was when Clairia’s heart train was derailed. Clairia’s mother became pregnant. There was no way she could go with her to Israel. Perhaps there was someone else who could take her mother’s place, maybe a family member. There were various ideas, but none came to fruition. There was talk of a cousin taking her after she finished school, but this appeared to be just talk.

     We did not have the luxury of waiting. Clairia was on a time clock. She needed to have that surgery before she suffered irreversible organ damage as a result of her heart condition. Yet there was no solution. The money was there, but we had no one to accompany her to Israel. Clairia’s mother could not travel to Israel when she was pregnant, not could she go with Clairia after the baby was born. She would have to stay home to take care of the baby. We were at an insurmountable impasse.

     Clairia’s mother was at home last Friday, when she went into labor. Her baby was then at term. She started to walk to the local health center, where she would deliver the baby. The trek to that health center was long and arduous. I can attest to the difficulty of that trek, because I saw today the path that Clairia’s mother took. It was all uphill over rough and uneven terrain. It would be at least 45 minutes, maybe more, over that terrain before she would reach the health center. This would have been a demanding journey for anyone, but that much more demanding for a woman in the full throes of labor.

     It was at some point during that trek that Clairia’s mother lost the baby. That is the way it appears, because the baby was not moving when Clairia’s mother reached the sanctuary of the Health Center. There was no fetal heartbeat when they examined Clairia’s mother, and the baby was eventually delivered stillborn.

     Yesterday, Dr. Cyriaque, nurse Achel, and I drove to Clairia's house. We needed to talk to the parents about Clairia. You may think that we should have allowed more time to pass before we intruded on the mother’s grief. Yet we could not do that. We dared not do that, because Clairia herself does not have the time to wait. It is time that works against her, not for her.

So yesterday we drove to Clairia’s house. However, it was not yesterday that we reached Clairia’s house. We had to stop a few minutes from the house, because the bridge going to her house was out. We turned around and went home.

Today, Cyriaque insisted that we go again, this time by a longer route. We did so. Little did I know that his longer route involved a thirty minute ride on a narrow, dirt road filled with rocks. On one side of the road was the ominous presence of a cliff with a sheer drop into a chasm. The narrowness of the road left little space between our van and the precipice of the cliff.

Yet we eventually made it to the village where Clairia lived. Achel walked down the steep hill to her house, and brought Clairia, her mother and father back up the hill with them. Dr. Cyriaque and I then sat in the back of the van with Clairia and her parents. Clairia’s mother’s eyes told me all that I needed to know, for those eyes were swollen from crying.

You can accuse us of insensitivity in forcing the issue so soon after the death of their unborn child. But is it insensitive to think more about the needs of the living, even in the face of death? Is it insensitive to consider the health of a nineteen month little girl who desperately requires not just our help, but also the expert help of those surgeons in far off Israel? I believe not.

We sat there, the five of us, for a long time in the back of that van. I briefly examined Clairia as we talked. She has worsened in the year that I saw her. The murmur is louder, and can be heard even without a stethoscope. All I had to do was put my ear to her chest. I then heard the same harsh sounds that a saw makes as it cuts wood. I also saw in Clairia the first, subtle signs of impending heart failure.

Clairia continues, as of now, to be an active, playful, and happy child; however, I am concerned that the time will come all too soon when her failing heart will prevent her from being that active, playful, and happy child. It is for that reason that Clairia needs her surgery now.

We discussed Clairia’s situation at length with her parents. Our efforts were gentle but forceful. I believe that, by virtue of those efforts, we convinced her parents that Clairia must have her surgery as soon as possible. Clairia's mother has now agreed to take Clairia to Israel for the surgery.

I know that the ordeal of losing a child is unimaginably difficult for anyone. Yet Clairia’s mother sees what Clairia's future will be without the surgery. My goal is to get Clairia and her mother into the clinic as soon as possible, and work out the logistics from there. They were not ready to leave their home today, and I can understand why. But Clairia's mother promised to bring Clairia to the clinic on Wednesday. We will send a vehicle to get the two of them.

I had lost hope that Clairia's surgery would happen. It is only today that, for the first time, I am cautiously optimistic. I feel that if we can get Clairia and her mother to the clinic, the necessary arrangements can be made. Let us hope that the promises of today will be met on Wednesday.

It is a tragedy that Clairia's mother lost her baby during childbirth, yet that tragedy may give life to Clairia; that out of death shall come life; that out of the despair of a lost child has come hope for Clairia. The story of Clairia and her stillborn sibling is a story of tragedy, but that tragedy may bring the triumph of Clairia’s successful heart surgery.

Today has been a good news day, and I anticipate that it will be an even better news day on Wednesday. It is then that I shall hopefully see Clairia and her mother welcomed into the open arms of our clinic. It is then that I will know that a child’s life will be saved.

I leave you with pictures of Clairia, I want you to see for yourself the child who may well be the first Burundian child to have heart surgery.

The first is of Clairia in the van, as Cyriaque and I talked to her parents. 

The next three are various pictures of Clairia, me, and her family.

Day 1 (continued)

We were still on Day 1 at the clinic when I temporarily interrupted my account to publish my most recent blog post. Now back to that first day. We continued on our rounds uneventfully until we came to the malnutrition ward. I will remind all of you, both new and old to my blog, that we have, here at the clinic, an entire ward devoted to the treatment of severe malnutrition. I am not referring to the type of malnutrition that is a fact of daily life in Burundi; I am referring, rather, to the life-threatening malnutrition that is all too common here in Burundi; malnutrition which dehumanizes the child afflicted with it; malnutrition which is an omnipresent blight on the world in which we live; malnutrition which is always shocking in its appearance; malnutrition which we should be ashamed that it still exists on such a global scale. But it does exist, and the patients that this clinic serves are fortunate that our malnutrition ward is there to serve them. That ward is the only one of its kind in Burundi, and one of the few in all of East Africa. It is a given that there is a need for many more such wards, but it is an equal given that socio-economic conditions prevent their existence.

The VHW malnutrition ward can theoretically accommodate as many as twelve patients. I say “theoretically”, because, if conditions demand, the ward can accommodate more patients. Conditions often do demand exactly that. I have only been here one week, and I have already admitted ten patients to the malnutrition ward. Those ten patients will stay on the ward an average of 7-10 days. It is only after those 7-10 days that they can safely be sent home. It is easy to understand why the ward is almost always full, and sometimes, more than full.

The patients on the malnutrition ward that first morning were in varying stages of treatment. I show you one of them.

This is a nine year old girl who weighs 12 kilos (about 26 pounds). She has acute malnutrition grafted onto chronic malnutrition. That is why she is so small. You can see her face, swollen with the edema typical of the Kwashiokor type of malnutrition. This girl is not your typical malnutrition patient, for she has other, serious medical problems. She has been admitted four times in the past 15 months for severe malnutrition. Her liver is significantly enlarged; she is profoundly anemic with a hemoglobin of 5; she has an elevated white blood cell count; she is moderately jaundiced with an elevated bilirubin; and she has had a prolonged fever. She actually looks better than those laboratory numbers would indicate. We don’t know what’s wrong with her. We have limited diagnostic modalities here. She will ultimately go home without a diagnosis. My thought is that she may have sickle cell disease, but we do not have the means to know that for certain. She will probably be back, if only, once again, to treat her malnutrition. Perhaps then we will make a diagnosis, but I doubt it.

My clinic day began immediately after hospital rounds. I knew even before I started seeing patients that it would be a busy day. Patients were streaming into the clinic en masse as we made our rounds. I could see that many of those patients were children, most of whom were strapped to their mother’s back, African style.

There were a number of routine patients that day, at least routine by Burundian standards: pneumonia, abdominal pain, diarrhea, scabies, secondarily infected scabies, fungal infections, to name a few. Those were patients I sent home. There were also a number of patients that I did not send home nor could not send home. These were patients that I admitted to the hospital. Some of those patients were routine admissions by Burundian standards, some were not. I give you all of those admissions, routine or not.

The first was a two month old boy who was brought into my office on his mother’s back. She removed him from her back and, at my request, unwrapped him. That was when I got my first look at him. It was not a reassuring look. He was clearly in severe respiratory distress. His respiratory rate was 70-80 times per minute, and his little stomach muscles were caving in and out with each rapid breath. He had a fever of 39.3. I listened to his chest, and heard sounds consistent with both pneumonia and bronchiolitis. It did not matter which it was, because he would be treated for both.

I checked his oxygen level with our pulse oximeter, and it varied between the high 70’s and low 80’s. This was a patient who, if he were in the United States, would have been admitted to the ICU. Needless to say, we do not have an ICU. We have a regular ward for sick children. It was, like the rest of the hospital, a ward with limited therapeutic resources. Among those limited resources were nebulizers for the treatment of asthma and bronchiolitis. What was not among those resources were the medications, like Albuterol, that go in the nebulizers. They had run out, and had been unable to get more. This is a sad commentary on the way of the medical world: we at home who have so much, they here who have so little. Fortunately, I had brought a supply of Albuterol nebulized solution.

It is said that the younger the child with bronchiolitis, the less likely that bronchodilators were to make a difference. I can tell you with certainty that the nebulized Albuterol did make a difference for my two month old. I cannot say that the child would have died if I had not arrived in Kigutu with my supply of Albuterol. I know that children here are remarkably resilient. However, I can say that the child is better now, and I believe that the Albuterol is partially responsible for that improvement. Yes, the broad spectrum antibiotic, Ceftriaxone, helped, but I have my doubts as to whether he would have survived without the Albuterol.

There was another element of treatment for this child that we take for granted in the United States. It is an element called oxygen. Every hospital, every clinic in the United States has an unlimited supply of oxygen. The clinic here has an all-too-limited supply of oxygen. My two month old did get some of that all-too-limited supply, but only on an intermittent basis, and only when he desperately needed it.

This two month old is still in the hospital, five days after I admitted him. He continues to breathe fast, and continues to show increased effort to breathe. But he is markedly improved from those first two days he was in the hospital. I am confident that we will be able to send him home relatively soon.

Now to the next two patients, both of whom were admitted for severe malnutrition. I have by now seen hundreds of cases of malnutrition. Yet my familiarity with malnutrition will never inure me nor should it inure me to the sight of another severely malnourished child. To see these children is always a shock, for these are children who are lifeless; children who are devoid of animation; children whose eyes are expressionless. They react little, if at all to their environment. Then there are the physical signs: the pencil thin arms and legs, and the often swollen faces and abdomens. I admitted two such children that morning.

     The first was a nine month old who weighed 4 kilos (a little less than nine pounds). This child's story was different, but no better than the usual one. Her mother had been unable to breast-feed her from birth. Apparently she did not have enough milk. So, instead of breast milk, she gave the baby water with sugar, and, later, regular milk whenever she could get it. The grandmother had seen enough by the time the baby was four months old. That’s when she decided to take matters into her own hands, or more precisely, into her own breasts. She herself decided to breast feed the baby. The only thing working against her was that she was 54 years old by then, and her youngest child was 13 years old. But breast feed she did. I am witness to it. The baby did not seem to care to what breast he attached himself, and he attached himself quite happily to his grandmother’s breast. I cannot imagine he got that much, because I had to admit him for malnutrition. However, he must have received something from the grandmother. If not, he would presumably have not survived even to that point.

     The second patient was a three year old boy who weighed 8 kilos (about 17½ pounds). He had the typical malnourished appearance: the abdomen swollen with fluid; the wasted extremities; and, perhaps most obvious, the vacant look so typical of severe malnutrition. You can see that look in his picture below.

    

     That was half of my first clinic day. The rest remains to be told. However, before I leave you again, I prefer to leave with some uplifting pictures, some feel-good pictures. The first is the positive end result that we generally get when we admit a child to the malnutrition unit. This is a child who presented in the same way as every other child I have admitted to the unit: with that same ennui and lack of life force so typical of malnutrition. You see her at the end of her treatment: a playful, happy, little girl. She seems to have visions of becoming a doctor, because, in the second picture, the papers she carries in her hands are her hospital chart. I suppose she thought she was making rounds with us.

    

These latter pictures I post are scenes from life in Kigutu. You will see these pictures and you will immediately know why I am here, and why I will continue to come here every year. The children are so beautiful, and so happy, yet they have nothing. These pictures speak far more than any ten thousand words I could possibly say.

And, finally, the doctor and the dancing girls: