In February 2017, I spent one month working in the Rwandan version of, what we call in the USA, a “tertiary care referral hospital.” Basically the last stop for the most sick. I want to introduce you to three children in particular and, through their stories, discuss the difficult medical challenges facing kids in low-income countries. I received permission from families to write about their children with the promise that I would use their stories to teach about health in Rwanda. In telling these tales I am going to ignore brevity, which is bad for a blog and attracting readers. However, the children deserve my best effort of depth and thoughtfulness. For the sake of digestibility, I am going to break this post into three pieces. Murakaza neza!
Introduction
“Honorine is a 2-year-old female, previously healthy, on hospital day 10 status post a full course of anti-malarial treatment for cerebral malaria who currently has generalized hypertonia, hyper-reflexia, and daily breakthrough tonic-clonic seizures while on maintenance phenobarbital.”
This is an example of a “one-liner” told to the senior physician on morning rounds. It is densely packed with important facts about the patient and her situation. It is also pragmatic and purely functional. Efficiency is important when there are twenty other patients to see, perhaps equally as sick. This is done every day in every teaching hospital around the world; the universal algorithm of hospital-based medicine that begins by distilling the complicated struggles of an ill person down to a single sentence. Even in Rwanda, several thousand miles away from home in the USA, the rhythm of hospital medicine is ubiquitous.
The “one-liner” is both necessary and woefully inadequate. Necessary to provide efficient care to dozens of children every morning, but cannot even begin to tell the story of a frightened little girl. I want to tell you a story about Honorine, not in the way doctors discuss patients, but rather by telling you how it felt to take care of her and what it taught me about the humanism of medicine. I want to write about several other patients I met in Rwanda and how their stories reveal the challenges of practicing medicine in low-income countries as well as the grim reality of rationing medical resources when they are limited. I want to tell you how Rwanda is addressing these challenges in a unique way, which perhaps can be a model for other, similar nations. But I am hoping to spare you too many numbers and figures; this post will probably ask more questions than it answers, and hopefully, like me, you come away with both an appreciation and sense of responsibility for the challenges faced by millions of children around the world.
Fineas
This 14-month-old boy came to us because of respiratory distress. To picture a child this age, think of when your own child, niece, nephew, or friend’s baby had just started walking. He is hesitant and wobbly. Rather than the fluid steps taken by an adult, his strides are more like a waddling duck, his arms slightly outstretched to the side for balance. He has a big, round, protruding belly, like a grandpa, because his abdominal muscles are not yet strong enough for a flat tummy. Now that you are seeing this little boy, let’s add in the respiratory distress. He is sitting upright on a bed, bent slightly forward, belly moving deeply and rapidly in and out. His chest is heaving outward and upward such that with every breath his belly curves under his lower ribs. His clavicles below the neck jut out as the skin tightens like the fabric of an open umbrella stretching out over its struts. His nostrils flare out like a horse as he works hard to suck air into his body. His lips turn crimson; the lack of oxygen in his blood adds a purplish hue. His eyes dart around the room, fixing on any adult that moves to comfort him. Though he has no words to describe how he feels, fear and confusion are written on his face.
Fineas has something called pulmonary hypertension; the pressure required to send blood from his heart to his lungs is too high. And all that extra work done by his heart over the past 14 months has caused it to fail, what doctors call “cor pulmonale.” We were lucky that the only pediatric cardiologist in the entire country was visiting for 2 days just when Fineas had arrived. Using ultrasound, he was able to diagnose the pulmonary hypertension and heart failure. Why his symptoms worsened so quickly was a mystery. Perhaps he had an infection, such as pneumonia, making it harder for him to breathe and causing extra work for an already overburdened heart. Fortunately, our hospital had a x-ray machine so we could look in the lungs for infection. We could also look for infection in the blood stream by drawing a sample and trying to grow bacteria in the lab. Neither test was revealing and we were left without a clear answer.
To try and lower the blood pressure in the lungs he was given sildenafil, AKA Viagra. I bet you didn’t know there were other medical uses for this drug! Now is a good time to discuss how obtaining and delivering medication works in a Rwandan hospital. Once a prescription is written by the physician, mom (always mom, very few dads are at the hospital with their children), must take the script and some cash to either the hospital pharmacy, or a pharmacy in town that carries the medication. In our case, mom had to leave the hospital to search. Once mom returns with the medication, it is her responsibility to give it to her child. The nursing staff, already stretched thin, only administers intravenous medicine. There are several major problems with this system:
- No cash, no medicine
- There may be several days between a doctor prescribing a drug and the child actually receiving it
- Children often receive incorrect doses, not on time, and not documented
In Fineas’ case it took several days to get medicine. We could only assume that Mom was delivering the correct doses at the correct times. However, it was common to see parents cut doses in half in order to make the drug last longer. At this point, all we could do was provide oxygen and wait to see if he improves.
He had been with us for a week, struggling to breathe, scared and confused. What he had not been thus far was fussy. Perhaps it took too much energy to cry. It was surprising when one evening he started to get agitated, crying out. He had a fever and the doctors on the evening team started antibiotics in case he did have an infection that we didn’t see before. The next morning his fever was gone though he continued to fuss and cry intermittently. He looked just as he had over the previous week: a wide-eyed belly breather with a heaving chest, purple lips and flaring nostrils. And then suddenly everything changed.
The hospital ward was relatively quiet that morning, with the exception of little Fineas softly crying out from time to time. His cries rose to a constant storm and then suddenly stopped. Our senior physician was first on the scene. As he approached the now still infant he first noticed a disconjugate gaze, one eye looked left, the other looked right. To imagine it is almost comical. However, the sign is bad. And for our physician the logical steps in his thought process were instantaneous (disconjugate gaze from lack of blood flow to brain = stroke. His heart must have stopped!). There was no hesitation as he checked for a pulse and then began chest compressions while yelling for help. A “code blue” it is called. Or often simply a “code.” Sometimes we even use it as a verb; Fineas coded. Other physicians, including myself arrived quickly to help. Someone began managing the rescue breaths, several others rotated every 2 minutes performing chest compressions. I ran across the hospital to get a manual defibrillator, the machine with paddles you see on TV that delivers shocks. The most senior resident physician took charge and gave instructions. Someone was sent for a drug, adrenaline, that is used to help restart the heart. It was all happening quickly yet calmly, as it should. Every 2 minutes the chest compressions stop for 10 seconds while someone checks for a pulse and the defibrillator is used to check if the heart has any electrical activity. I placed one paddle on his chest and the other on his back; the cold metal almost covered is entire body. Electrical signals resembling normal heart rhythm burst in sharp squiggles on the screen and for a brief moment I had hope. However, he had no palpable pulse. This is a curious situation, one that they don’t show you on TV. On your favorite medical drama, they typically show you a flat-line speeding across a monitor while it cries a gruesome “beeeeeep.” Asystole, it is called. Then someone yells, “clear,” and the patient is shocked back to consciousness. Unfortunately, real life rarely mimics television, especially in medicine. A flat line will never come back from a shock. And the same holds true for pulseless electrical activity (PEA). Fineas’ heart was sending its electrical signals; the muscles just simply were not beating. I called out, “no shock, resume compressions!” Two minutes later the subsequent pulse check showed a flat line. There is no loud, long beep. There is no shock. Resume compressions.
Chest compressions in a child this small are not like the TV version where someone is hovering over a body, arms outstretched, hands locked together, shoving downward on the sternum with the weight of your body. Fineas was small for his age and his torso could literally fit in your two hands as if you were holding a large mixing bowl. For these chest compressions, you wrap both hands around the chest, fingers to the bed and thumbs on the sternum, like how you would hold a rugby football if you were about to pass it underhand. Then with your thumbs you press down on the chest, squeezing the rib-cage together with more force than you would ever imagine actually applying to a person. It is like you are squeezing the life out of someone, but ironically, sending blood to their brain keeping it alive. Essentially squeezing the life in to a person.
The resuscitation had gone on for over 15 minutes, with no heart beats or pulse at each 2-minute check. No return of spontaneous circulation (ROSC), in technical terms. It is always a challenge deciding when to quit the extraordinary efforts. A good tool to help make that decision is an ultrasound machine. During the pause in compressions, one can take a quick look at the heart. If there is no movement of the heart muscle, there will be none later. However, if it quivers, meaning it is trying to beat, then there is a chance. As one of the few trained in ultrasound, the job fell to me to image Fineas’ heart and make the call. I ran down the hall and wheeled in the ultrasound machine, splattered the probe with some gel, and at the next pulse check placed the probe in that notch in the rib cage where the sternum meets the belly, pushed down hard and aimed the probe up towards the heart. It was the first time I had ever seen a still image of a heart on ultrasound without first pushing the “freeze” button on the console. I hesitated for a second that seemed like an hour as I examined the image on the screen and finally said, “no cardiac activity.” There was no shout of “resume compressions” from the team leader. There was simply silence. The senior resident looked around the room at each rescuer on the team, met eyes with each one of them, one by one, then said, “time of death…”
The high acuity ward in the pediatrics section of the hospital is a single room about the size of a master bedroom in a large American home. Ten heavy metal beds are squeezed in with barely space for a person to stand in between each. Every bed had a child and mother lying in it and often a second family member. Nurses, medical students, and physicians pushed their way in and out of the room in a constant stream of traffic. When Fineas coded the room became even more cramped with rescuers. The scene was intense. The nine other children in the room, some of them old enough to understand what was happening, as well as nine other mothers saw a rescue attempt that hardly looked kind. Rather, one could walk into the room unaware of the situation and easily mistake it for a brutal assault. Imagine seeing a 6-foot man holding an infant down on the bed with his hands while squeezing hard enough to break ribs. In an American hospital, the room would have been private and the family ushered out quickly in order to both spare them the anguish of watching the proceeding while also keeping them out of the way. But in this Rwandan hospital, and every similar institution, the event was full of curious and horrified spectators. When resuscitation efforts concluded, the entire ward was there to share in the mother’s grief, publicly and dramatically. In places like Rwanda, there is little privacy in tragedy.
I wish I could tell you Fineas’ mother and family were able to gather together and begin the grieving process. But unfortunately, there was no such luxury, at least not right away. Like many hospitals in low-income countries, bills must be paid up front before care is delivered. Remember how Mom had to leave the hospital, walk to a pharmacy, and buy Fineas’ medicine on her own? Remember the chest X-ray and blood culture to look for infections? Those bills needed to be paid first, then tests performed. If Fineas had needed a surgical procedure, Mom would have to go to the store and buy all of the items necessary: gloves, needles, syringes, drugs, scalpels, etc. When it is time for a patient to be discharged, they are prevented from leaving the hospital until any outstanding bills are paid. As a result, the hospital is often feared as a “jail” for sick and poor people. When patients or guardians come into the hospital for care, IDs are taken at the gate and proof of payment must be shown in order to leave. In fact, security goes as far as checking every vehicle leaving the hospital for any stowaway passengers!
Fineas’ mom had a dead child and an unpaid bill. She could not leave the hospital, could not take her child home, could not grieve with her family. All because she could not pay her bill. A bill for hospital care that did not save her child. When I returned to the hospital the next morning, Mom was still there, in line at the cashier’s kiosk, crying and still unable to take her son home. She had slept overnight in the very bed on which Fineas passed the day before. For extreme situations like this the doctors in the pediatrics hospital quietly contribute money to a fund that is also quietly given to families who need financial assistance. After two extra days in the hospital Fineas and his mom were able to leave once we helped her clear a 20,000 Rwandan Franc bill. About $25.
Fineas was the first child I have ever lost while directly under my care. Once the code was over and we had a chance to debrief, my attending physician sat down with me alone and asked how I felt. During the code there is no space for emotions and he wanted to make sure mine were addressed. To be honest, my feelings were dissonant, like an out of tune orchestra, and each instrument was trying to play the loudest to attract the attention of the conductor. I think it was a strange, raw mixture of sadness, inadequacy, and anger. I was sad that Fineas lived such a short life burdened by chronic disease. (Imagine living your life always feeling short of breath). But also sad for the many African children who, like Fineas, never have the chance to grow up because of malaria, HIV, congenital heart disease, starvation, infectious diarrhea, and many other diseases we do not think about here in the USA. I was mourning the lost potential; grieving the loss of the many gifts these children would have given the world if only they were born somewhere else. Even though no decision I could have made those few days would have saved Fineas’ life, I still felt personally inadequate for not preventing his death. But I also felt the inadequacy of the health care systems available to the poor, not only in Africa, but across the world. If Fineas was American and not poor he would still have pulmonary hypertension, but would also have regular follow-up with a pulmonologist, access to medications to help him breath, physical and respiratory therapy, social work services to help the family navigate a complex medical system, and the constant attention from a family physician. The inadequacy gave way to anger as I thought to myself, “this is not fair!” Was Fineas less deserving of the best medical care possible simply because he was born in Africa? As a society, with all our knowledge, technology, and money, why is medicine still a luxury commodity? And as the scope of this problem entered my mind, my emotions reversed back to inadequacy, realizing that I was personally powerless to fix anything.
My attending had few words that would soothe any of these emotions. This was because my feelings were perfectly appropriate. Fineas’ story is sad. Medicine is inequitably distributed between the rich and the poor. And there are real solutions to these problems that are often hindered by politics, racism, and greed. The healthcare available to the poor is inadequate, and one should be angry about this! He told me about the first child he lost as a young doctor some 15 years earlier, and that this experience will stick with me. I will always remember his name, his story, and how I felt. The wisdom he gave me was to try and use this experience to become better. A better physician. A better person. An acknowledgement that there are people in this world who need others to fight for them. The truth is, little by little, we can do better for the next child like Fineas. We can find ways to provide comprehensive medicine to the poor and neglected. We can do better.
In the next post you will read about another little boy named Blaise who has a brain tumor. His story will highlight the difficulty of triaging limited resources and the effect this has on doctors’ medical decision making.
Articles to read:
Atul Gawande, a surgeon at Brigham and Women’s Hospital in Boston and a New Yorker staff writer, discusses the intersection of business and medicine as it pertains to the poor.
My goal for the next post was to write about my experience in Rwanda, however, a story came out in the news this week that is important to share and discuss. Amy Bleuel, the founder of 