A very sick child

     A two year old boy was carried into the clinic on Friday morning. He was in what is called “status epilepticus,” meaning that he was in a continual state of seizure activity. The story is as follows: this 2 year old boy had been, according to the mother, a completely normal two year old boy until three days prior to his arrival in the clinic. He did all the things that any two year old boy does: walk, run, jump, talk, and, presumably, get into trouble. It was at that point that the mother reported that he developed increasing weakness. The weakness progressed to the point where he could no longer walk, or even sit.

     The child started to have seizures at some point early on the morning he was brought into the clinic. The seizures continued uninterrupted over the next two hours, maybe even three hours. It took the mother that long to get to the clinic. I am not sure how she got here; perhaps she carried her seizing child up the mountain; perhaps she had some form of transportation that got her part of the way here. All I know is that her seizing child remained in her arms the entire time he continued to seize.

     The child arrived in my office late in the morning on Friday. He was unresponsive, and still seizing. The seizure involved primarily the left side of his body, but did extend to his right hand. This is what is called a focal seizure, and often has a worse prognosis than generalized seizures. I cannot explain why his seizures were focal. Perhaps I could explain it if I had access to any of the modern diagnostic modalities that are available at any hospital in the United States, modalities like CT scans or MRI’s. However, there is only one CT scan in the entire country and it is in Bujumbura, and there are no MRI’s.

     We immediately gave the child an intramuscular dose of Diazepam. The seizures stopped very quickly after the Diazepam was given, but the child remained unresponsive. I was able to then examine the child. I was struck by his marked pallor: his nailbeds were chalk-white, as were his conjunctiva (the lining of the eyes and eyelids). His spleen and liver were significantly enlarged. Surprisingly, he did not have a fever.

     We were not sure what exactly was wrong with the child, but our first thought was malaria, despite the absence of fever. In fact, malaria is generally the first, second, and third thoughts in these situations, when you have a critically ill child like this. We did a quick test to document the presence of malaria, and it was instantly positive. I also did a blood test to confirm the anemia. His hemoglobin was 3.7, which meant that he was profoundly anemic. The anemia was caused by acute hemolysis (breakdown) of red blood cells, secondary to the malaria parasite.

      We gave the child twice the usual dose of quinine, because that is the protocol when a patient has severe, life-threatening malaria. We also gave him a high dose of Ceftriaxone, because of the possibility of secondary infection, like pneumonia or even meningitis.

     The child was in dire need of a transfusion. We now have the ability to do transfusions at the clinic. We have not had that ability prior to this year. However, this child had blood type B+, and we did not have any B+ blood. The nearest center that did have B+ blood was at least an hour away in a town called Bururi. The lab tech went down the mountain in the truck to get the blood. I did not expect him back for at least four hours, so I was pleasantly surprised when he returned in three hours. The child was subsequently transfused. We put him on our limited supply of oxygen prior to and after the transfusion.

     It appeared that we had stabilized the child. His breathing, which initially had been rapid and labored, slowed over the next 24 hours. It was not normal, but he showed less evidence of respiratory distress. However, his level of consciousness remained unchanged. He did not open his eyes; he did not respond, except perhaps to deep pain.

     It was approximately 36 hours after he was admitted that the child’s breathing once again became labored and irregular. We increased his oxygen intake; we tried everything we could. It was all to no avail. The child died very soon after his breathing had worsened.

     I do not know exactly the ultimate cause of his death at the end. I do not know why he had such a prolonged seizure. I do not know why the seizure was focal, rather than generalized. I can only surmise about these issues. What I do know for a fact is that malaria killed this child.

I know the numbers about malaria: somewhere between five hundred and six hundred thousand children die in Africa from malaria every year. A child in Africa dies every minute from malaria.

     The statistics are almost inconceivable. What is not inconceivable is to be the doctor who could not prevent a child’s death from malaria. What is not inconceivable is to see first hand a previously healthy two year old child die in his mother’s arms from malaria.

I know now all too well the destructive power of this disease, so ubiquitous here in Africa. But knowing it and seeing it in all of its unmitigated force are two different things. I saw it Saturday night, and I will presumably see it again for I intend to keep coming back here year after year. I can only hope that the scourge of malaria will somehow be lessened at some point here in Africa. I know that malaria will never be eradicated, but perhaps it is reasonable to hope that one day, we will have a lessening of the devastation that it wreaks on the children of Africa.

The One Month Old Baby

       It is rare for a patient to come to the clinic at night. The walk up the mountain is difficult enough during the day, and even more foreboding at night. The same is true for the steep and treacherous mountain paths that connect to the clinic. That is why, when a patient does come to the clinic at night, it is because he is in dire need of medical care. This is particularly the case when the patient in question is a child. I tell you this as a backdrop to last night’s events.

     Last night at about 9:30 P.M., a mother arrived at the clinic with her one month old baby. The baby had developed a high fever three days ago. He had ceased eating. The day after he developed the fever, he started having seizures. During one of the seizures, the grandmother performed scarification over the baby’s lower chest. Scarification consists of making shallow incisions in the skin, generally with a razor or knife. The baby bled, but not profusely, and the bleeding was minor. However, the scarification was considered a success, because the baby did bleed. The seizures ultimately stopped.

The baby showed no improvement over the next 24 hours: the high fever persisted, and the baby took nothing by mouth. The mother then brought the baby to the local “Centre de Sante” (Health Center). These “Centres de Sante” are tiny offices which are found in almost any village in Burundi. They are staffed not by doctors, but by nurses who possess little medical expertise. The centers are ill-equipped, rarely possessing even the most rudimentary medical equipment, such as stethoscopes or thermometers. I refer to them as “Centre de Mort” (Death Center).

The mother of the one month old baby had no other choice but to take him to the Centre de Sante. She had no other access to medical care. The nurse at the center did not examine the baby. He merely asked the mother what was the problem, and then sent her home with Tylenol for the baby.

The baby was unchanged over the next 24 hours; he did not eat and continued to have high fever. The mother was then able to take the baby the next morning to the large provincial hospital in Rumonge. This is one of the major medical centers in Burundi. However, the baby was not even given a cursory exam at the hospital. Instead, the nurse, upon hearing the story, told the mother that they could nothing for her there at Rumonge, and that the mother’s only hope was to take the baby to our clinic in Kigutu.

I do not know the details, but I do know that, over the course of the day, the family was able to get access to a car. They made the one hour drive up the mountain to the clinic last night.

I was summoned along with the other weekend doctor, Dr. Remy, to see this one month old baby at about 9:15 P.M. One look told me that there was virtually no hope. The baby showed obvious signs of meningitis and sepsis. His anterior fontanel (“soft spot”) was bulging; his breathing was irregular, almost to the point of being agonal; his extremities were cold and clammy; he was profoundly anemic, as was evident by his extreme pallor. He was comatose, responding only to the most painful stimuli. His pupils were dilated, and responded sluggishly, if at all, to a bright light.

There were four of us in that room: myself, Dr. Remy, and two nurses. We did everything in our power to save that baby. He was so dehydrated that we could not find a vein, but we were still able to give him injections of three antibiotics: Ampicillin, Gentamicin, and Ceftriaxone. We gave him an injection of steroids to lessen the swelling in his brain. We put him on the limited supply of oxygen that the clinic possesses. We worked on him for over two hours, and stabilized him enough to get him to the ward. However, within 20 minutes of arriving on the ward, he died. I was with him when he died, and I watched while his breathing ceased. His heart slowed and very soon, there was no detectable heartbeat. He died in his mother’s arms at about 11:30 P.M.

Our cause was hopeless from the beginning. There was nothing that we could have done to reverse the cascade of events that led to his death. But was it too late two days ago when he went to the “Centre de Sante?” Was it even too late when he went earlier in the day to the hospital at Rumonge? Yes, it probably was, but we will never know for certain. But whether it was or wasn’t, it does not excuse the callous disregard for human life shown at the “Centre de Sante” and at the hospital at Rumonge. I know where I am. I know that I am in Burundi. I accept the medical limitations imposed by working here. I accept that I can only do so much for my patients. I accept what I have and what I do not have at my disposal. What I cannot accept and will never accept is indifference and irresponsibility from any person in the medical field. It is incumbent upon all of us who do this for a living, whether it is the lowliest nurse or the most sophisticated doctor, to do what we can for our patients. Shame on those who don’t; shame on the “Centre de Sante” and shame on the hospital in Rumonge for dereliction of their duty. 

Year Four Begins

It has been many months since all of you have heard from me; many months since you have shared in my experiences at the clinic in remote Burundi. I have now returned to that clinic after a fifteen month absence. This will be my fourth year at the clinic, and, based on my first two days, I expect it to be no different than any previous year.
It’s not as if I forgot the extent and the degree of pathology one sees at the clinic. One can never forget. Yet, seeing it once again in all of its presentations is still shocking; not surprising, but shocking.
     I need only be reminded of that pathology by the clinic’s malnutrition ward. The ward is more than filled to capacity, as there are presently 14 patients on the ward, but only twelve beds. That’s because two of the beds are occupied by two sets of twins. You see below a picture of the malnutrition ward. The picture does not show you the entire ward, but it does give you an idea of what the ward looks like.

      The most dramatic of these twins were two girls, now almost six months of age. They each weighed 5 lb. at birth, and at 5 months of age, they each weighed 6 lb. That’s right: the twins have gained exactly one pound in the first 5 months of life. The mother attempted to breast-feed them, and she is still breast-feeding them. However, she realized at some point that her twins were not getting enough milk. Therefore, she decided to supplement them. Formula is not an option here, so, instead, she made a Burundian staple called “bouillie.” It is a sort of rudimentary Burundian porridge: not exactly the kind of stuff you want to feed your infant daughters. The bouillie did nothing to correct the situation.
     The twins came into the clinic severely malnourished. That was almost a month ago, when they were five months old. There is a standard UNICEF protocol for the treatment of malnutrition, but that protocol is designed for infants greater than 6 months of age. We at the clinic modified the protocol for the twins, and, because of that modified protocol, they are doing better. The problem will come when they go home. What will happen then? Are they not destined to return here when their severe malnutrition resurfaces? The answer is somewhere between “perhaps and probably.” It’s not as if the mother’s milk supply will magically increase. We will send them home with some Plumpy-nut, the nutritional peanut paste that is the standard nutritional supplement given to all the malnourished children. Once that Plumpy-nut supply is exhausted, the plan is to give them regular milk; not the ideal alternative for a six month old, but significantly better than the “bouillie” they were getting. I show you here a picture of the now 6 month old twins, as they are today.

     Then there is a three month old on the ward who is also a victim of inadequate breast milk production. He has not gained any weight in those three months, and remains at his birth weight. He too is on the modified UNICEF protocol, and is doing better. Again, the problem will arise when we send him home, as we inevitably must do. The only hope is that the mother’s milk production will increase when he goes home.
     There are also a variety of older children, including this five year old who has all the signs of Kwashiokor (protein deficiency) malnutrition: the swollen face and legs, the expressionless look of complete apathy on his face. He will get better, but it will take time. This is the boy, two days after admission to the hospital.

     This is my fourth year at the clinic. I now have four years of perspective. Do I see any improvement in those four years in the problem of malnutrition in Burundi? I don’t think so. The malnutrition ward continues to be filled to capacity, and often beyond capacity. I see many children in clinic ever day, and the vast majority of those children are malnourished to some degree, some severe enough to be hospitalized. 
     I know that there are experts, including dedicated agronomists, working on the problem of malnutrition in Burundi. I wish I could say that their efforts have been successful, but I can’t. I will be coming back here for many years. Perhaps in the years to come, I will see an improvement in the malnutrition situation. One can only hope so. Seeing one severely malnourished child is one too many. Seeing many, as I have and as I do, is an obscenity.
     Before I leave you, I show you two unrelated pictures. The first is simply a cute, little boy who is the sibling of a patient in the hospital. The second is a mother taking home her newborn baby, wrapped in the traditional Burundian way. The baby is only four hours old, but that is the usual amount of time the mothers spend at the clinic after giving birth.

An Appeal for Dainess

Most of you who read this know the story of Clairia: the little Burundian girl who went to Israel to have heart surgery. We now have the next Clairia. Her name is Dainess Hagibamana. She is an eleven year old female who was brought into my office at the clinic by her mother last June. The Dainess that I saw that day was a beautiful, but solemn young lady. Her heart-shaped face was devoid of expression, and her dark, ebony eyes revealed nothing of what she was feeling. She appeared apathetic to her surroundings; she neither smiled, nor frowned. Her pencil-thin arms and asthenic body told me that she was malnourished.

I quickly learned the reason for Dainess’s malnutrition: her heart had been seriously damaged by the ravages of rheumatic fever, and she was now in heart failure. Her lungs were partially filled with fluid, making the mere act of breathing difficult. Her legs, from the knees down, were swollen from accumulated fluid. Her liver was enlarged. 

I enclose two pictures of Dainess from the day that I admitted her to the hospital. You will see the portable oxygen tank next to her. She probably needed that supplemental oxygen all the time; however, our limited supply dictated that we could only give it when her oxygen level was dangerously low.

Dainess had severe mitral valve regurgitation and pulmonary hypertension. Medical treatment might help her temporarily, but medical treatment would not change her abysmal prognosis. Her heart failure would progressively worsen, and Dainess would probably die within 12-18 months, if not sooner.

There was only one solution: Dainess needed a new heart valve to replace the damaged one. That new valve would guarantee that Dainess would lead a normal life. Our hope of Dainess receiving that new valve was a faint one. Such an operation was impossible in Burundi. Once again, just as we did for Clairia, we applied to SACH (Save a Child’s Heart) in Israel. Only they could make this seemingly impossible dream become a reality. The question is, would they do it? We waited for weeks, if not months for an answer. No answer was forthcoming, and we had all given up hope for Dainess. It was only last week that we received this surprise e-mail from SACH:

I am glad to inform you that our doctors reviewed the medical reports of Dainess from Burundi and accepted her to the program. Our office will now be in touch with the family regarding all the paperwork needed for her journey and she will be coming to Israel to receive life saving heart surgery.

Thanks and best regards

Tamar

I wish that was all that was needed. I wish that I did not have to go to the money well once again, but I do. We still need approximately $5,000 to make Dainess’ surgery the reality it deserves to be. That $5,000 will cover the travel expenses for Dainess and her mother.

I ask you to contribute what you can towards that $5,000 goal. By doing so, you can take pride in the fact that you are saving a child’s life; a beautiful child who will otherwise die before her thirteenth birthday.

It is my own personal hope that our generosity will bring hope to a people who live without hope. We, who have everything, will give of ourselves to those who have nothing. We will live in the spirit of Tikkum Olam: the spirit of trying to save the world. It is the spirit that drives SACH; it is that same spirit that drives all of you who read this appeal. I know you, and I have faith in you. I know that you will do this. I know that you will be the final piece in the puzzle to save Dainess. You will put Dainess and her mother on that life-saving plane to Israel.

Clairia was the first child in the history of Burundi to have corrective heart surgery. Your contributions made that surgery possible. This is what I wrote after Clairia returned home from Israel with a normal heart.

None of you who read this, none of you who have contributed to this cause should underestimate what you have done. You have saved a life. A child who would have died before her twentieth birthday, a child who would have had to suffer through a lifetime of increasing heart failure will now lead a normal life. What you have accomplished is no small feat. What all of us working together for a common cause have accomplished is no small feat. To put that accomplishment in perspective, I enclose an e-mail from Lisha McCormick, Director of Development at Village Health Works (as well as a good friend of mine):

“I was speaking to a group of students the other day, one of whom was about 19 and relayed that he wanted to be a pediatrician. I asked him why he was drawn to that particular specialty and he relayed a really touching story about the impact physicians had on him when he was a young child suffering from chronic asthma. And then he added..."Plus, when you save a life...its a whole life."

I can't help but recall this when I think of Clairia. While I know it is a bit dramatic, I picture her as a five-year old running to play with other children, I picture her on her wedding day and then one day having a child of her own, both of them living in a Burundi that has grown better over the next two decades.

But today you should shed a tear, and then smile and know that you've saved a life....a WHOLE life...”

You can do the same for Dainess. You can make her the second child in the history of Burundi to have heart surgery. You will then do what you did for Clairia: you will save a “WHOLE life.”

You can make your contribution by going to the following link:
https://salsa3.salsalabs.com/o/50467/t/14024/l/eng/my/donate.jsp?supporter_my_donate_page_KEY=6724