Life and Death on Upendo Ward

During my short six weeks working at MTRH, I have had the opportunity to learn medicine in a whole new way. I have seen disease processes here that I will never see in the US, I’ve witnessed children die of pathology that is easily cured only a half-day’s plane ride away, and I’ve treated a wide, wide variety of infectious diseases with the same four antibiotics. Mostly, I’ve had the privilege of caring for an entirely new population of amazing little people and their families. The lessons I’ve learned from their reactions to serious illness, tragedy, and economic hardship will stay with me long after the milligrams-per-kilo dosing of antimalarials and HIV-treatment algorithms have faded from my memory. Below are just a few of the many children I have cared for this season at MTRH.

Shelly – The most memorable of the deaths on our firm, I actually cared for Shelly twice in the course of six weeks. Stricken at a young age by rheumatic heart disease (the sequela of un-treated strep throat, unfortunately very common here where strep throat is not often diagnosed or treated), she had had chronic heart problems and symptoms of heart failure for the past three to four years. Now, at age 14, she presented with acute worsening of her symptoms, was short of breath at all times and completely unable to lay flat. We improved her symptoms with medication during the first admission, but she returned five days later with even worse complaints, as well as a new requirement for supplemental oxygen. During the second admission, Shelly did not really respond to her medicines as well as the first time, and a repeat echo showed severely diminished heart function. One Friday afternoon with the help of an interpreter, my medical student and I had a very hard conversation with her mother. The “your child is going to die” discussion is never, ever easy, but it is even more difficult when you can’t even convey such an unthinkable concept in the same language. Thankfully, our interpreter had worked frequently in the peds heme/onc unit and did a wonderful job. At the end, when I asked Shelly’s mother if she had any questions, she said no, and with tears in her eyes said “I just thank God that you have told me this, because now we know.” As simple as that. I am rarely thanked at home when I actually do something helpful, but here, parents thank us for simply taking the time to talk to them, even when we are saying something horrible. As soon as we left the bedside, Shelly’s mom pulled the curtain around them, and woke up her beautiful, sleeping, 14 year-old daughter to tell her the news we had just delivered. I can’t even imagine the strength it takes to do so such a thing.

Shelly lived through that weekend, but started to clinically decline early the next week. We had told her mother our goal was to get her symptoms controlled well enough that she could go home; however, one look at her Monday morning and I knew this would not happen. Tuesday morning during rounds, the curtain was pulled around her bed, but we could all hear her groaning in pain and gasping for air. The Registrar told me that he had called the ICU about transferring her, but she was already pulseless in her extremities, so we knew it wouldn’t be long. Most unfortunately, and for many absurd and complex reasons that I won’t go into right now, Kenya has really no form of IV pain relief on a country-wide level. Morphine would have been a perfect drug in this case. Despite the fact that our team was essentially ignoring her (every time I asked the Registrar a question about her – his response: “We’ll see what the ICU wants to do.” Dude! She’s not going to make it to the ICU), I sent the pharmacy student to see what form of IV pain medicines we may have. The best we could do was an IM shot of ibuprofen. I knew we were doing the best we could do, but it was one of those times the best just wasn’t good enough. As I stood by Shelly’s bedside in her last moments, I put one arm around her mother, who had a single tear running down her cheek. That tear said so much: the loss of a child, the loss of life’s hopes and dreams that have been built over the course of 14 years, the failure of a medical system in a modern world to prevent this one very preventable death. Of all of the patients I cared for at MTRH, I felt the most attached to Shelly and her mother, and I was very saddened by her death. I have always found teenage deaths to be the hardest and the saddest. Teenagers are just becoming individuals with their own identities and plans for the future, they are old enough to understand when they are dying, and they are old enough to be mad about how unfair it is. It is, simply, unfair.


Sarai – one of many children abandoned at MTRH, Sarai was a patient on my team before I arrived. She was found alone outside the hospital at the beginning of August. Immediately noticeable was her macrocephaly (fancy doctor talk for “large head,” and truly, the largest head I’ve ever seen) as well as severe malnourishment. She was estimated to be about a year old. Her head CT on admission showed hydranencephaly – basically a condition, usually congenital, where there is far too much fluid in the head and the remaining brain structures don’t form correctly. Indeed, Sarai has very little-to-no brain tissue, she essentially has a brainstem and that is all. Sad to say, but she will never have anything we would consider any quality of life; she will never roll over, sit, walk, talk or interact meaningfully with the world around her. She has primitive brainstem reflexes (including sucking, which is probably how she is still alive), and will require skilled medical care for the rest of her life. She has had a complicated medical course since admission, and I have advocated several times to my team that discontinuing further aggressive medical management might be the most ethical course. Sarai’s case is further confounded by the fact that she was abandoned, and is therefore now a ward of the state, so the legal aspects of stopping further care must also be considered. Even if Sarai could reach a point of being medically ready for discharge, the chances of finding a children’s home that could attend to her many complex medical needs are slim to none. As it is, on my last day on the wards I left my team still piecing together the vast moral, ethical, and legal components of Sarai’s care, and I don’t think there will be a resolution any time soon.


Jake – another very sad little boy I took care of. A previously healthy 3 year old, he came in with a story that sounded a lot like meningitis. He received appropriate treatment for his meningitis, as well as treatment for pneumonia and malaria, but he just did not get better. In fact, he got worse, to the point where he was very lethargic, could not sit, walk, talk, or eat on his own. In the end, based on his lab studies and clinical course, it was thought he likely had a viral encephalitis (inflammation of the brain). Even in the US, sometimes kids with this condition recover, and sometimes they don’t. As with other conditions caused by viruses, most of the time there is not a specific treatment either, and we just have to wait and see if the child will improve over time as the brain re-wires itself. Yet another one of my difficult Friday afternoon conversations was with Jake’s mother (why did we always do these on Fridays? I don’t really know. “Friday Death Rounds” my team leader glibly called them). We actually had the Kenyan medical student caring for Jake have the conversation with his mother, and she did a fantastic job, and said it was a meaningful experience for her, which was about the only silver lining. Again, Jake’s mother’s response to us telling her that her previously normal and healthy son would probably never be normal again was: “Thank you so much for telling me.”


Jane – very similar to Jake, a 2 year old previously healthy, beautiful little girl who came in looking and sounding like meningitis. She was even in the same bed he had previously occupied, which was more than a little uncanny. When we did her LP (spinal tap), she had frank pus that came out of her back (should be clear, like water) so our diagnosis of meningitis was a little more confident. Unfortunately, like Jake, she showed no improvement, continued to be very lethargic, irritable, unable to sit, walk, talk, or eat on her own. She also continued to have high fevers for at least a week on what is considered appropriate treatment for meningitis, indicating that the infection was not adequately treated. Suspecting bunk drug product (all too common here), our pharmacist advised us to change from the generic to the brand form of one of the antibiotics, which did seem to make an improvement in her fever curve. Unfortunately, by this time, the damage had been done and she showed no clinical improvement. It’s hard to know if her deteriorating condition was the result of un- or under-treated meningitis, a complication of meningitis (ie brain abscess), the result of an adequately treated but bad case of meningitis, or even some other condition such as seizures. In her case we will probably never know, though it makes no difference now to Jane or her mother.


Steven – a very, very malnourished little guy, 2 years old, who came in about the weight of a 3 or 4 month old. Upendo peds wards certainly sees its fair share of malnourished children; however, Steven was quite severe. He also had HIV (actually AIDS based on clinical criteria) for which he had not received treatment, and chronic diarrhea and poor feeding. We were able to make little headway with him in the short time he was on the wards, and he died suddenly one night. His case is a perfect example of how long diseases can go on at home here before being brought to medical attention, as well as the still-present devastating effects of untreated HIV infection.


Emmanuel – by far the biggest diagnostic dilemma we saw, Emmanuel is a 10 year old with a six month history of worsening abdominal swelling, fatigue, and fevers. And by “abdominal swelling” I mean he looks like he’s nine months pregnant. Or really, like twelve months pregnant. He has a massive, massive spleen that is taking up most of his abdomen, in addition to stealing his blood cells from his peripheral circulation, making his white blood cells, red blood cells, and platelets dangerously low (leading to infection, anemia, and bleeding, respectively). The list of diagnoses that causes such a huge spleen is short, even in Kenya. Despite its brevity, we were still unable to make a diagnosis. His bone marrow aspirate showed no malignancy or infection, his abdominal ultrasound showed nothing but a big spleen (which we already knew about), and his splenic aspirate was negative for the two most likely infections. So, he sat. Sat and waited for expert opinions, for more blood, more platelets, more answers that we could not provide. Every day on rounds we would discuss the risks and benefits of just treating him for one or both of the infections that this could be… but the tests were negative… but it depends on how reliable you think those tests are here… well why did we get them if we weren’t going to believe them… and on and on and on we talked ourselves in circles until every day, we decided for one more day to “wait and see.” By the time I left the wards he had been there for three weeks and really nothing had been accomplished. In addition to my most difficult diagnostic dilemma, Emmanuel’s case was also my most frustrating.

And now, so I don’t convince everyone (including myself) that MTRH wards are all death and despair, a few of the kids I’ve taken care of who did well.

Elizabeth – ok, so I’m not sure if she really belongs in the “happy ending” category, but I have a lot of hope for her, so here she is. Also on my team before I even arrived, she is a darling 19-month old little girl who presented in early August with severe malnourishment, cough, and fevers. In the course of her workup, she was newly diagnosed with HIV, which resulted in a new diagnosis for her mother as well. She was also diagnosed with and started on treatment for tuberculosis. Her primary problem continues to be poor weight gain. She weighed 5kg (~10lb) when she was admitted in early August; when I left her in mid-September she weighed 4.97kg. This child is eating massive, massive amounts of calories every day and refuses to gain weight. Because of the severity of her illness when she came in, she was not immediately started on treatment for her HIV, but by the time I left, our team thought that antiretrovirals might be the key to her weight gain. The reason I think, hope, and pray that she will do well in the end is her mother. Despite a devastating new diagnosis for herself, Elizabeth’s mother has been the absolute model of patience, devotion, and dedication to her little daughter. Despite the tedium of a (so far) six-week hospitalization, not to mention an eventual bill she can’t even dream of paying, she is always smiling, has a fantastic attitude, and celebrates, even leads our team in celebrating Elizabeth’s small victories. That Elizabeth is tiny carbon copy of her beautiful mother made these two my favorite people to see every day on rounds. I truly hope she will eventually experience a significant improvement.


Franky – a very sick, scary little guy when he first came in. 3 months old, HIV-exposed but not yet diagnosed, he was admitted with a short history of respiratory symptoms: cough, wheezing, and fast breathing. The first day we rounded on him, he was still on oxygen, looking so-so, but being treated appropriately for pneumonia. On the second day of his admission, the Registrar and I took one look at him, and I thought to myself, “ok, so THIS is how today is going to go.” He had probably the most severe respiratory distress I have ever seen in a baby, and frankly, looked about 75% on his way to being dead. Very quickly, the registrar got an IV in the baby and called the ICU, while I frantically wrote for, tracked down in pharmacy, and administered myself every medicine that I thought would possibly be helpful. We ended up broadening his antibiotic coverage for bacterial pneumonia, as well as starting him on treatment for PCP (a specific type of AIDS-related pneumonia) and tuberculosis. He actually turned around so quickly that by the time the ICU came to see him later that day, he was no longer sick enough to have one of their beds. After three or four more days of good IV antibiotic treatment and steroids, he looked like a new man, normal oxygen levels, feeding well, looking for all the world like a normal baby. In addition to some good teamwork, we were helped out that day by a few other things. First off, he happened to be in the very first bed. If he had been later in the rounding queue he very well might have died before we got to him. Secondly, his mother had told us earlier that she had a previous child die from some type of respiratory infection. While not uncommon, I think this revved up our team’s “not to this baby, too” mentality. Lastly, one of the very first things I personally collected was a resuscitation bag and appropriately-sized baby mask, just to help ward of the bad joo-joo. I truly think it helped in Franky’s case.


Milo – Very similar story to Franky’s, was admitted only a few days later. A 17 month old little boy, also HIV-exposed but not diagnosed, he too came in with pneumonia-like symptoms and low oxygen levels. He was an irritable and cantankerous little squirt who refused to keep his oxygen tubing in his nose. Problem was, whenever he yanked it out he would become lethargic, dusky, and very, very hypoxic. The sat monitor would mostly read “lo” or somewhere in the 40s or 50s. This is bad. Luckily for him, he got very sick a few days after Franky, so we were prepared for his foray into the world of Trying To Die. Like Franky, with a little more antibiotic on board, PCP treatment, and TB treatment, he came off of his oxygen and turned around quite well in the end.


Irene – a fantastic 4 year old girl who came in with seizures and history concerning for meningitis. I actually assisted with her LP (spinal tap) and got to talk one of my med students though the procedure, which he completed successfully. In addition, I supervised her conscious sedation for the procedure. Conscious sedation is when we give kids (or adults) a little (or a lot) happy juice medicine to sedate them for painful procedures; specifically procedures where they need to hold still. While this is fairly common practice in the pediatrics world, CS in the US is not something any resident should ever, ever, under any circumstances do without a staff physician present. Considering I was the only physician for miles around even involved in the procedure, that left… me. To direct my first unsupervised conscious sedation while teaching one American med student and two Kenyan clinical officers about CS and LPs. Oh poo. It actually went very well, and overall I was happy with the teaching-learning-patient care dynamic that had taken place. Irene turned out not to have meningitis, and after she recovered from her seizure and its associated medications, she got to go home happy as a clam.


Diana – by far the most memorable clinical experience in Kenya, probably in my life of medicine thus far. Diana is a 3 month old baby, not even on my team. All of the American doctors and medical students happened to be on the pediatric ward one afternoon during a teaching session; we were there because the only XRay viewer happens to be on the peds side. One of the medical students looked at me and asked “is THAT your patient?” Past his pointing finger I saw a baby, looking for all the world like she was dead, being frantically, ineffectively bag-masked by a nurse. Our peds team leader had gone out to Mt. Elgon for the day, so as the only pediatrician, all eyes were on me. Oh boy, here we go. I turned the baby, positioned her, corrected the nurse’s bag-mask technique (the mask was actually upside-down on her face, this is what we were dealing with), quickly assessed the rest of the situation. No breathing, no heart rate, this baby was dead. Bagging continued, I started chest compressions, we gave epinephrine. The rest of the Americans found the baby’s chart and tried to track down at least one Kenyan physician for me to confer with. In the pauses between cycles of bagging, chest compressions, and epinephrine, I listened. For the sake of full disclosure, I must say that I didn’t expect to hear anything, and that eventually I would be pronouncing this baby. But, against all odds, eventually I did hear something. Faint at first, thinking I was only imagining things, but yes, the baby DID have a heartbeat again. We stopped giving epi, we stopped compressions, and eventually we were even able to stop bagging the child. Many, many things were happening during this resuscitation; people were running meds, starting additional IVs, taking over bagging when the nurse got tired, holding up the baby’s mother who was literally on her knees in anguish… but in the end, my little team of people, we saved this baby. We pulled her back from the brink. When I met her she was dead, when I left her, she was breathing on her own and stable enough not to go to the ICU. This is the first time I have led a code, the first time I have seen a code result in non-intubated survival, the very first time I have said to myself “Holy Shit, I’m a doctor.”

Overall it was one of the best run resuscitations I have seen or been a part of. I’m not sure if it’s because I actually knew what I was doing or if everyone else was so scared they ended up listening to the only person talking (me). Diana and I owe a huge debt of gratitude for the outcome to the nurses, clinical officers, and medical students who were there with me. We were also assisted tremendously by an angel in the form of a respiratory therapist named Mark. Here I will break my “do not use first names” rule; the fact that he shares the same first name as my father and appeared at exactly the time I was desperate for some respiratory expertise confirms my belief that he was sent to me by a Higher Power. After the baby was breathing on her own again, but still very sick, Mark, Respiratory Therapist appeared out of nowhere and just got things done. In minutes, he found the nebulizer machine and medicine that I had been asking for for a half hour, administered the treatment, was able to obtain a blood gas and run it in under five minutes, hook up the oxygen tank and tubing the nurses had been struggling with, and make the old, microwave sized suction machine work with only a few curse words and a swift kick. For all of that and the thousands of other things he was helping me with, his long white coat fluttering out behind him looked like nothing more than the cape of superhero. In short, this man saved me, and in doing so, he saved Diana.

Having never, ever seen an RT at MTRH until this very moment, I was curious to find out more about him. Turns out Mark started out as a clinical officer (Kenya’s equivalent to NPs) in Eldoret, but then went on to train as an RT in Chicago for three years. Now he works mostly in the ICU but does do some things in the regular wards as well. He and I chatted for a long time afterwards about what is possible in the MTRH wards and what are the limitations. It is true, as he says, that many lives could be saved with a few simple respiratory interventions: more oxygen, more tubing, more advanced support such as CPAP and BiPAP. He communicated to me a desperate need for more nebulizer machines, and especially the tubing and masks that go with them. In America, we discard these after one use, but at MTRH, the same masks and tubing are used for every patient on the ward. In the end, I thanked him profusely for his invaluable help (which he deferred by saying he was “just doing his job”) we exchanged contact information, and I promised to keep a sharp eye out for discarded respiratory equipment once I return home.

In the end, this is both a remarkable and an unremarkable story. In the end, yes we were all just doing our jobs. Though I personally had little hope for a good outcome of this code, there was never any question of whether I would be involved. It’s what we do. As physicians, it’s who we are. Despite the chaos of any code (especially in Kenya), when it comes down to it, the training just takes over, it’s automatic. Position. Clear. Bag. Chest Rise. Compressions. Cycles. Epinephrine. Re-Assess. It’s been engrained into me over years of study and good medical education. Because of where I was at the right time with the right people and the right training behind me, a child now lives. It’s this exact experience that we all hope for when we write our personal statements for medical school, with the vague intention of going into medicine to “help people.” At the time, I hadn’t the foggiest idea what that meant. Now, because of Diana, I do.