Progress

There must have been about forty of them. Some were shirtless, some were wrapped in rags, some were dressed in their best. They say at the foot of the table in the shade taking it all in: the dignitaries, the marching band, the events unfolding in front of them, the implications of which they couldn't possibly understand.

We sat a couple rows back, looking on as the events unfolded. Another PAC doc and I had been asked by the director of our center to accompany her to the unveiling of a new vaccine. The question was which vaccine would it be? Not even the director knew and so we waited patiently under the canopy reserved for dignitaries including the minister of health, the minister of education, in-country directors of WHO, UNICEF, UNAIDS, and other movers and shakers who had dedicated their lives to children, the same children who had gathered at the front of the tent. They huddled together in the grass, happy enough to take part in the celebrations, occasionally a few would shoot shy smiles over to me and the other PAC doc, checking to make sure we were enjoying ourselves as much as they were.

After my last month on the wards at Queen II, I have a greater appreciation for preventative health care such as vaccines. Back home in the states we memorize schedules and tables and admonish mothers when they fail to bring their child in on time for shots. But the truth is, we've done such a great job in most cases that things like epiglottitis and meningitis are rare enough that they're becoming relics relegated to text books and discussed more in lecture halls than on hospital wards. Here of course its very clear what the absence of these vaccines mean. Most of my frustration over the past couple weeks dealt with handling these illness and the fallout that results from their devastation.

It's been a difficult, but I've come away with a handful of victories that still burn bright in my mind.

About three weeks ago, a nine year old was carried through the door in the arms of a caretaker who worked at her orphanage. I had gotten a phone call warning me of the situation, but I hardly had time to prepare as I was rushing to stabilize another child in the acute room. By the time I made it to her bedside, a number of people had gathered, encircling her. There was her sister, roughly in her early twenties, who looked on, not entirely sure what was happening, and why her younger sister had gone from walking, talking, and playing to comatose and unresponsive to pain, the events around her, and the people who were squeezing her hand and calling her name. There was the elderly caretaker who worked at the orphanage, the Brit who appeared to be in his early twenties, here with intentions as good as any others, and the elderly gentleman who had helped drive them their. These were her family members, as HIV had claimed the lives her parents just a few years back.

Its the orphans that I think are the most compelling in terms of my being here. They are the ones at greatest risk, not only because of their lack of social support, but also because whatever disease claimed their parents typically also holds them in its grip, whether it is HIV, TB, or more generally, grinding poverty.

She looked like what I sometimes describe as "critically ill" when I write my progress notes. Its the look and general condition that makes your insides wince every time you walk by a bedside, realizing that someone's fate is out of your hands. Its that realization that makes it a little harder to breathe, a little harder to process and think straight.

I grabbed one of the medical officers and had him prep the procedure room. Minutes later, I scooped her up in my arms and followed after him. Making my way to the table inside we set her down. Moments later, we had popped a needle in her back, pulled off 10ccs of yellowish fluid, and carried her back to her bed. The fluid had come out under such pressure that I worried if in fact that move had been prudent, and if her brain was at risk of herniating through the base of her skull given the elevate pressure squeezing on it. By now she was a little more awake; perhaps the needle in her back had something to with that. She had started to thrash around and soon afterward she jerked in her bed so violently that her face came crashing into the beside rails, blood trickling between her lips.

By late afternoon, I had the results of the LP (spinal tap). Under the microscope I saw tiny little spheres in pairs; the bacteria had picked up the blue tint of the dye used to stain our micro slides. I rejoiced at what I saw: Strep Pneumonia. A virulent bacteria, as previously described as vaccine preventable, it was also one that was very treatable. So that very same evening I started her on double coverage antibiotics, started her on fluids, and updated her makeshift family on her odds. She was very sick, and paired with her HIV, it was unclear what her outcome would be. I wanted to tell them that I had never before cared for a child this sick with fulminant meningitis, but I withheld that information as it would do little to inspire confidence in them or in myself.

Instead I watched for days as she seemed to get sicker, her fevers climbing higher, as high at 1o6. Remembering the way the fluid sprayed out of her back when we tried to drain it, I started adding medications that would alter the fluid balance in her body. Diuretics to make her urinate, a carbonic anhydrase inhibitor that had the fortuitous side effect of decreasing CSF production, the fluid that bathes the brain and is manufactured in its inner crypts. I propped her head on pillows, sedated her with Valium when the trashing got worse. This was one of the weeks when I was on the wards on my own. So instead of finding help in another doctor, I turned to the wisdom of Nelson's Textbook of Pediatrics, a four thousand page volume of wisdom compiled by the some of the greatest minds ever to care for children.

Its pages urged me to keep faith, to continue treatment, even as the fevers climbed and her mental status remained just short of militant. A nasogastric tube had been placed a couple days later to try to get her calories, but she wasn't having any of it, and after four failed attempts, blood pouring out her nose, we decided to hold off for a couple days.

Days passed, each one brought a different caretaker to her side. Every time I walked by her bed, I looked on to see if we had any reason to be hopeful. Not knowing where we were headed, I offered only guarded optimism to the family.

And then one day, her eyes opened. Just the night before she had strangely found peace. Her thrashing had stopped and with the touch a hand or the sound of voice, her eyelids would flutter. Each event was reported to me be her caretakers, each moment a little victory in their minds. Despite my skepticism they inspired hope, and by the following week I had found myself looking forward to work, the moment when I would pull up to her bedside, and perhaps hear a piece of badly needed good news.

And when it finally came, it came with such speed and such force that it left me speechless. Within days her eyes had opened. Her lips started to form words. Water. She begged for water incessantly. She had been dried out like fruit left on the vine too long, an attempt to control the pressures in her brain. And after days of endless urination and fluid restriction, he body was screaming for fluid. Giving the go ahead, the green light to let her drink to her heart's content was a big day, a great feeling.

Day after day she claimed another victory. First there was speech. Then it was the ability to sit up with support. Movement of arms and legs followed soon afterwards. By the end of the week she had found her way out of bed and started taking her first steps again. It was liking watching an infant speed through the stages of development in front of your eyes. She was a walking, talking, chewing little miracle. The day that I saw her take down a quarter loaf of bread washed down with fruit juice was probably one of the finest moments of my medical career. I couldn't help but stare at her, to gawk. Her nurses, her caretakers, my translator - we all basked in her glory, because finally after all the defeat and all the heartache, here was one that was going to walk away.

I recently shared with someone close to me that its the defeats we look to forget. We take our lessons, our beatings, and then we move on. It's the victories that we hang on to. They are hard fought, they are slow to come, unlike our defeats, but nothing, nothing will take them away. At the end of all this, I know that nothing is guaranteed, least of the all the future of this little girl growing up with a disease that is ravaging her country, but at least she's bought herself another chance. And that's something that I can be proud of.

Clearly not every victory can be miraculous, but there are still others that I find myself proud of. In the states we have children who we call, "Children's Specials". If they were adults, they might be insensitively be called train wrecks. I might as well be honest and admit that I have called a couple patients such names before. We call them train wrecks because when they "walk" into the ER, (more often they are wheeled-in in specially built wheelchairs), they have a number of medical problems, each one potentially life threatening, and each one complex beyond measure. They usually have home ventilators, feeding tubes, a list of medications that can reach the high twenties, and complex care regimens. They require full time nursing either by devoted and very loving parents, or by special nursing facilities.

When these children were admitted to hospital, they usually ended up staying for weeks on end. A resident assigned to one of these patients usually spent a good part of his or her mornings navigating through each issue in attempt to formulate a reasonable plan of care for the day.

Most of these children had been affected by illness at birth whether by result of prematurity, or infection, or both, and they had found themselves in this state only because we had developed the skill and ability to keep them alive beyond what their little bodies were capable of doing if left to their own devices.

I have often wondered the ethical implications of prolonging life because we can. I understand the moral argument that where life can be sustained, it should be, and I can only imagine the grief and heartache one must feel at losing a loved one to a devastating illness that robs them of their personality, and then to be asked whether they would like to withdraw care from their loved one. It takes a certain appreciation of complexity, of faith in there being something better after this life, to allow one to "pull the plug." So though I never have completely agreed with it, I understand why we do what we do to prolong these lives, and arguably prolong suffering.

I just never thought I would be advocating for it. I never thought I that I would choose to specialize in such children's care.

And yet, that's where I find myself these days. Even after I complete my month long shift at Queen II, there's work left behind, and if I'm lucky, there's work that follows me out the door.

About a couple weeks ago, I walked up to the two medical officers with chart and textbook in hand. "Guys, how do we treat TB meningitis?" Having learned the answer the hard way just the week before, I wanted to ensure that my trainees wouldn't make the same mistake. When they offered the standard response, I flipped open the text and pointed out the new recommendations, the ones that advocated for second line drugs usually overlooked, the only drugs that would penetrate the blood-brain barrier. After grabbing their attention with this little nugget of information, I flipped open the chart in hand to the list of medications this child was on. Neither Ethionamide nor Streptomycin were to be found.

He was a two year old who had been taken hostage by TB meningitis, and to large part had lost the fight. Over the past two months, his mental status took blow after blow, to the point that his quality of life meant endless seizures, rigid posturing of his entire body, so that it resembled more a plank of plywood that a limber little boy, and high pitched screams throughout the night that keep the wards awake. In attempt to relieve the pressures on his brain, a shunt had been placed a month prior in Bloemfontein. Running from the inner core of his brain to the surface of his skull, traversing over the muscles in his neck to the surface of his sternum and finally diving into the depths of his abdomen, a piece of plastic tubing provided the only exit for fluid incessantly dripped out the depths of his brain like some leaky faucet. It provided some relief, but it was hardly a cure, and eventually he was shipped back to our care. Knowing that he had never been optimized on treatment, I took him onto my service on his return.

I restarted his TB meds, restarted his steroids, and re-engineered his antiseizure regimen. It took weeks, but before I left Queen II, I had another partial victory on my hands. It's true that he will never play, talk, or walk again, a point I made very clear to his mother, but both of us reveled in the little victories that we could now claim. He no longer shrieked through the night, his sleep was restful, his arching was better, and what's more, the seizures that lasted hours on end day and night were now reduced to one or two daily episodes, each lasting less than ten minutes.

Sometimes you have to take what you can get. Not every child will get up and walk away from an illness relatively unscathed like my nine year old. Sometimes you have to deal with the fall out of survival from a disease that was supposed to take a life. In this case, we had beaten back an acute illness only to find that it had left behind a two year old deeply debilitated. This was a child that would have earned the title "complex" if he were in the states being cared for by a tactful practitioner, "train wreck" by one who was a little more insensitive.

Either way, I never imagined that a child like this could survive in a health care system that had yet to reach every child in providing the most basic of services, let alone provide life long complex to care to a survivor of TB meningitis. And I guess I should be honest, it can't. I realized this when I had the child follow up to see me this week at clinic. Leaving Queen II, I took a handful of patients with me who I wanted to follow up. Only about half of them had HIV, but their needs were so great that I worried that they would get forgotten in the health care system, only surfacing when their parents were at their wits end, when every other practitioner had turned them away, when they were on death's doorstep as children such as these find themselves inevitably.

So instead, I promised each of their mothers that if they came to our clinic, they would be seen, that I would coordinate their complex care, ensure that they were made comfortable, that their weight would be checked and their calories counted. There are a total of four children I expect to see over the course of a week. Each one of them has been affected by some sort degree of neurological devastation. If we were in the states they would eventually receive tracheostomies to help the breathe, feeding tubes to give them nutrients, and round the clock nursing care to provide for most of their needs. But here such things aren't imaginable for most, and I still deliberate the ethics of providing such measures anyway when it prolongs the inevitable. Regardless, I look forward to opportunity of at least providing palliative care, measures to provide comfort to them and their families as these children march towards their inevitable end. Because in my mind that's a better life then some horrible death in a sweltering, overcrowded hospital ward, and the fact that I'm even in a position to provide such care means that at least on some level, something was done right, and a victory however small can be claimed.

Of course the greater victory is largely unsung: victories won where prevention has staved off some horrific fate. We take for granted in the States what we've accomplished with prevention: the virtual elimination of small pox, polio, tetanus, diphtheria, and a host of other illnesses. Some of those victories are shared here, some are still in the making.

As we sat there under the shade of the dignitaries tent, I reflected on the wins and losses of this past month. Some were big, some were small. The ones that hurt the most were the ones I thought were preventable. And so, as they finally announced the new vaccine, Hemophilus Influenza, a bacteria responsible for meningitis and epiglottitis, I felt a wave of relief knowing that in less than a year, the entire face of pediatric care in this country might just take a giant step forward and in doing so ensure the health of its children. Most of them in our company were happy enough to take part in the celebrations, dancing along to the marching band. Me, I was happy enough being their pediatrician.