Sunday, September 28, 2008

Middle Ground

I've never been so desperate in my entire life.

Instinctively, I put my hand on her chest. At this point, when you've gone through your list of medications, you've reached the bottom of your differential, and nothing you can do can fix her failing body chemistry, you start reaching. There's the phone call to the colleague, asking him to review everything you've done, there's the furious search through any available text book, there's prayer, and finally there's touch.

My two year old with advanced HIV was malnourished, septic, dehydrated, and hyperglycemic. The tell tale film on her eyes had hit by noon that day, and occasionally she would struggle to the surface and manage to blink it away, only to have it replaced minutes later.

I cared for sick children in the ICU during my training, and when there wasn't a parent by the bedside and they were really sick, unresponsive, I sometimes squeezed a hand, put mine on a forehead or a shoulder. I know it sounds ridiculous, but sometimes I felt like they could feel it, and as they lay in bed unresponsive and alone, I hoped that they would know that someone was with them.

It was the end of the day. I had gone through Penicillin, Ampicillin, Gentamicin, Ceftriaxone, whopping doses of Bactrim and IV Chloramphenicol, a last resort antibiotic rarely used in the west because of its ability to overnight end your body's basic functions, resulting in the apptly named "grey baby." And with each new attempt to pull her back from the brink, she slipped further away.

I put my hand on her chest, over her heart, with her mother looking on. She was nearly comatose at this point. I wanted her to know that I tried.

Her eyes flickered. A wince. And then, with one of the last movements I saw her make, she reached over with her left hand and grabbed my index finger. At first I panicked. I thought that I was causing discomfort, so I slid my hand away, to her stomach, and still her hand followed, latching onto mine.

We both knew that she was going to die. I had done everything I could possibly do. And when I turned from her to tell the only other person in that room who needed to know what was about to happen, her mother broke into tears. She had been holding back all day. That morning, when I first saw her I told mother that I was concerned about her child's blood glucose. I thought this was diabetes. We couldn't test for a pH to see if she was acidotic, so I did a quick urine dipstick, marvelling at my astuteness for considering the diagnosis in a child who had lost three of her nine kilos in the past month.

And when the test came back negative, I had told her mother that everything was going to be fine, that this was good news and that we wouldn't have to worry about managing an insulin drip in a country where IV pumps don't exist. What I was starting to realize though, was that I was running out of answers to explain why she kept getting worse, that not much was adding up.

I thought it was going to be okay, that if I tried hard enough, that this one would pull through. Surely she would atleast make it until tomorrow, and then maybe we could buy a day at a time.

But in a matter of hours, expectations changed, and at the end of the day, there wasn't a single thing I did that changed the inevitable. When I left that day, thinking that it was time to give mother and daughter time alone, I told mom to pick her up and hold her. All day she looked like she was afraid to touch her daughter, either fearing that it would be the one thing that pushed her over, or more likely, mettling herself for heart break. But in her waning moments, I wanted my two year old to know that she wasn't alone.

I realize that by claiming a death is one's fault, you concede that a person has control over the life over another, has the abilty to play God. It's a foolish conceit. And yet, knowing how ridiculous it is doesn't seem to make loss hurt any less.

I received some good advice last week, namely, "some bodies will fail no matter what, just because they're not built to withstand what they've been subjected to. Even mythical uber-doctors like Paul Farmer lose patients, and it's not even because they lack proper supplies or ... technology. People die because life is ultimately not a matter of any doctor's willpower."

And:

"We have to hold ourselves accountable to the people in front of us while also shoring up ourselves to be able to be in this type of work for the long haul...we are running an equality marathon, not a sprint, but...we aren't walking either."

I've spent a good part of this week mulling over the responses I received from both people. I concede that the death of a two year old girl, malnourished, with advanced HIV isn't the fault of one. It's the fault of many a failed system. But I struggle with accepting this reality, simply because I fear admitting it's truth engenders complacency. I wonder how the outcome might have changed if each loop in the net that was supposed to catch my two year old had held a little tighter - if the health official had pushed his charges to get tested, if her mother had gotten the pills that would have prevented transmission, if the local health clinic had sent her to us just days earlier, and if the doctor who saw her on her dying day had the resources and the wherewithal to hold back the tide.

Sunday, September 21, 2008

A Better Doctor

In the end, she was my responsibility. I let her die.

I walked into the Acute room of Queen II on Thursday morning and saw a six-month old with a flailing chest and withering skin, dying of malnutrition. Her face, her hands, and her legs were swollen and the tissue thin skin was ripping under the added tension. She had been starving for who knows how long, and her particular brand of wasting was kwashiorkor, essentially a protein deficiency that results in fluid escaping to unintended pockets in the body, hence the swelling.

I struggle with a way to better describe her, but at the moment she looked like a tin windup toy ticking away, the key in her back unwinding slowly, inevitably. Her chest fluttered, pulling in whatever breath she could muscle. Mostly she just succeeded in collapsing her chest. Somewhere in the middle of her was a defect. Normally I would have called it a pectus, short for pectus excavatum - a structural deformity which causes the chest to take on a concave shape. It reduces the volume of the chest cavity and sometimes limits the function of the heart and lungs. In her, however, there was an additional deformity along her ribcage - three bony knots which bordered a concave region where her heart should have been. Either she had been neglected and abused, or she had a major congenital defect which caused her body to eat up far more calories, trying to stay alive, than she could take in.

In the acute room, a 10x12 space, much smaller than a single patient room you might find in the states, we managed to cram nine babies, eight mothers, five cribs, two oxygen concentrators and two tanks. She caught my eye. When I took her onto my team, I had every intention of giving her everything I could muster. She was the sickest kid in the ward, she was the reason I was there.

I started the antibiotics, started the oxygen, started the zinc needed for her skin, and the feeds she needed to turn around.

That was nine.

She was dead by three.

In the hours between, I was weaving through children, patients, almost, but not quite so sick. There was the six month old with meningitis so advanced that he could no longer feed, his neck and back arced back so severely that if I lay him on his back, only the back of his head and base of his buttocks would touch the mattress. He was on his seventh day of antibiotics without improvement. There was the two-month old wasting away, vomiting up bright red blood. There were the nine month old twins with HIV. One brother had suffered from his own case of meningitis. It left him devastated, blind, partly deaf and hypertonic - rigid as a board. His brother, slightly luckier, sharing his bed, was battling with dysentery - bloody diarrhea that had made him lose ten percent of his body weight. Their mother never left their bedside for a solid week. Every time I walked by their bedside, mother was either feeding them, changing them, or whispering secrets into their tiny ears. I love my twins. I can't help myself.

By the time I made it back to the acute room, my tin toy was winding down. The key in her back had begun to hesitate with each turn, with each breath. Each one was spaced a little further apart. Her limbs had slowed to a halt. Her eyes rolled upwards and her lips were quivering. Her eyes had stopped blinking hours ago and a filmy grey had settled onto the bottomless black that were her pupils. She was sick. That I knew. But despite my best efforts she was sicker.

In the states, when a child is dying in the hospital, alarms are screaming, code carts are being rushed into rooms, there's a confident sounding attending physician of skill and experience standing at the bedside barking orders and a flurry of staff tackling each one.

Here, there was a baby in a bed with mother a foot away, her head bent down on the mattress, trying to ignore the inevitable. And the confident sounding attending physician of skill and experience was nowhere to be found. Instead there was me.

I don't know why I walked away. I told mom that if anything changes, if her child gets worse, or doesn't seem to be waking from what looks like sleep, that she should call for me or the nurse right away. I think I was trying to buy time, trying to acknowledge that I was out of answers in a place other than in front of my patient whose eyes couldn't look away.

A question from another mother. A question I could answer. A problem I could solve. And when I turned away and looked back down the hallway, about to make my way back to the bedside, a nurse pulled me aside, summoned me into the treatment room. Two other nurses and Dr. Phiri, the other doctor on the ward, looked at me.

"Your patient," she started, "the one with the skin and the swelling, has expired."

Has died. And that was it.

It felt like an accusation. It felt like failure of the most personal kind.

I looked at my tin wind-up toy, lifeless on the table - the key in her back rusting in place before my eyes.

When my first one died that week, just two hours on the job, I knew we had come too late. As I mashed down on her cold bony chest, I knew that we were laboring to make ourselves feel better, a little less impotent. But this one, this one we had a shot. Back home, I wouldn't be her last hope, there would be a better doctor for her.

The only other doctor on the ward struggling to manage her own kids on death's doorstep, the two of us staffing what's supposed to be the major referral center for an entire nation's children, both of us overwhelmed.

I walked back into the acute room. I put my hand on mother's shoulder. She never looked up, her body quietly shaking, the mothers of the children around her circling, supporting her as best as they could, knowing that it could too easily be their child next.

In the end, I walked away, unable to deal with my own impotence. I couldn't save her child, and I couldn't comfort her.

I wonder what those mother's think of me when I walk into that room.

Sunday, September 14, 2008

Hope (Brothers II)

It's not always bad here. Sometimes things work out. Sometimes our efforts amount to something.

Brother came back. He was wearing a wide brimmed hat, a plaid shirt, and something of a swagger. He walked in with an XRay in his hand and a slip of paper in the other. When Mae spotted him, she grabbed him by the shoulder and ushered him to my side. I was focused on another patient's bukhana (chart), and we she pulled me around, it took me a minute to recognize him. I guess I had written him off after our initial meeting, but either something we said stuck with him, or more likely, we had underestimated him.

I looked over his shoulder for his brother, but saw no one that looked like my patient. I turned to him with a confused look, he said that his brother was too sick to come. I panicked.

"Too sick? How sick? Is he eating? Is he gaining weight? Does his throat still burn?"

His brother replied that while he had started eating, he was in fact, still very weak. He was keeping down a small amount of the nurtitional shake that we had supplied him with, but it wasn't enough to pull him out of bed. So in his place, I had Brother, holding an xray, hoping to help.

I raced down the hallway with Mae and Brother in tow. I wanted so badly to have an aswer, to know what exactly we were fighting. Was it just HIV, or was there concurrent TB? I threw the film up on the view box and flipped the switch.

Airway - clear, no compression

Bones - no lytic lesions, no sign of malignancy

Cardiac- if anything, his heart was small - after years of malnutrition, his muscles had atrophied, including this one. Cardiac failure is a major complication of refeeding. Give someone too much fluid, or push too much volume too fast, and a weak heart won't be able to keep up with the bodies demands

Diaphragm- sharp borders, no sign of fluid collection

Extra-Pulmonary - no obvious nodes, no sign of soft tissue injury

Fields - Lungs...clear

A sigh of relief. I grabbed the second piece of critical information: the sputum culture and gram stain - negative

So in this country where the prevalance of TB is among the highest in the world (in addition to HIV), my patient is TB free. What this means is that his management just got easier. No worrying about drug interactions between the antiretrovirals and anti-TB medication, he won't need to take any.

So I turn to Brother and explain to him the good news. I ask him when he can bring the younger back with him. He shakes his head. Brother has plans to go to South Africa for a job. He doesn't know when he'll be able to come back, but he needs to go.

He can tell I'm dissappointed. He looks to the floor. I explain to him that his brother needs him. He's obviously too weak to manage all the medications that he's going to have to take, and most HIV patients need a caregiver to stand by their side when they initiate therapy.

He promises me that he'll find someone. There's a grandmother that's literate. Maybe she can help. So faced with little other option, I send him to social work, hoping that if I give him a transport voucher, he'll be able to pass it on to his his brother and grandmother so that the journey to our clinic will be a little easier.

I worry that my patient is getting sicker since seeing me, and I wonder if he'll even make it to the appointment in two days.

That was Tuesday.

Thursday was something of a bad day. One patient after another, each more complicated. There was the pregnant mother who had forgotten to take her HIV medications, thereby risking herself and her fetus to resistance. There was the family of three who had recently lost all of their possesions, including their meds and their bukhanas, to a fire set by an abusive husband/father who decided that if they wouldn't give him money, he was going to beat the hell out of them, and then burn all of their possesions. I was working through lunch, trying to stay on task, as I walked out to the lobby. I picked up the next chart and Mae comes racing up to me.

"Our patient! He's here! He's here with his brother!"

She rushes outside and I see a closed-bed pickup truck with a wheelchair being unloaded. Minutes later, my patient is being wheeled in, Brother behind him, and an uncle with the unmistakable wrap-around sunglass of the blind, mounted on his face.

I usher the three of them to my room, Mae on my heels. My patient is firmly planted in his wheelchair not making eye contact. Slowly we review all of the facts we covered last week. His throat no longer burns. He's been eating, minimally, but it's an improvement. The diarrhea and the abdominal pain are still there. But gone is the cough, which confirms what the xray had originally assured me. I look to my chart, 29 kilos. Thats a fraction less than what he weighed last week. I'm careful not to put too much stock in this. After all it often takes more than a week to see any significant change and he hasn't even started antiretrovirals yet.

I have to admit, I'm surprised that Brother is still around. When I ask him why he hasn't left for South Africa yet, he shakes his head. He's not going. He's decided that he wants to stick around, to see his brother get well. I don't know why I doubted him so much, but he's coming through in a way I hadn't expected. When we ask who's going to help with refeeding my patient, he steps forward without hesitation. He helps wash his brothers hands because he's too weak to stand up out of the wheel chair. And when we give him the packet of RUTF (Ready to Use Therapeutic Food), it's Brother that volunteers to feed him.

The rest of the hour was spent detailing what would be coming next for the patient. Now that his brother was here, and his uncle (though blind) had volunteered his help, we had the safety net we needed to push forward. After leaving my room, they would go onto our adherence counselers who would condense two weeks worth of information into one afternoon. Next they would go to pharmacy to pick up the prescriptions he needed. Finally, there would be another stop at social work, and then they would be on their way home. His next appointment would be in a week, but this would be last time I see him for a while.

Starting tomorrow, I head into Queen II Public Hospital, and that means I'll be away from the clinic for the next four weeks. In that time, my patient's life is bound to change dramatically. He'll start puting on weight, his diarrhea will resolve, and he may gain the strength he needs to leave the wheel chair. I'm sad that I won't be there to see the gains that he'll make. But I've introduced him to two of the senior docs, and together, they'll take over his care. I told them I want him back when I return.

Before they walked out that door, I made it a point to tell Brother how proud of him I am. I'm not sure if it registered, he didn't really react to the comment, but I hope it sunk in. I can tell my patient is hopeful too. That day he started carrying on a conversation with us. His voice is tiny and frail, but there's confidence in it. More than anything, I can tell he's not scared, and I convince myself that he's even a little hopeful now that he's got Brother in his corner.

So as I march into Queen II, where I'm likely to be surrounded by kids sicker than any I've ever seen, atleast I've got this one victory, and it gives me hope that there will be others.

Sunday, September 7, 2008

Brothers

I felt guilty for asking him to do it. I felt guilty for asking him to do it infront of his fifty year old father and his 18 year old brother, the luckier of the pair. I felt guilty for being in that room, and I felt guilty that I needed a translator, someone with likely the same illness, to stand by me and help me through this.

"I need him to take his clothes off"

His face is angular, his eyes sunken but vigilant. Again I feel guilty, this time as I compare my patient's face to E.T. His father sat by his side just hours ago when he went into the counseling room. They pricked his finger twice, each time for a different test. One to confirm the other. Each one positive.

"Yes, all of his shirts need to come off"

He's 17. He has HIV. His father sat beside him the whole time. My guess is that he has vertically acquired HIV, given his lack of blood transfusions, sexual activity, and IV drug use. He didn't even smirk when I asked him about sex. In the states, even the innocent would manage a blush. The guilty might look away, or they may own up to it. He just looks through me.

"How long has he been losing weight?"

Brother spent most of the day waiting outside. He hasn't been told anything, his father says. Can I tell him? His father nods. I wonder how he could not know at this point. Sitting in the waiting room at the Baylor Clinic, surrounded by patients with HIV. They numbered close to one hundred that day. He must have realized that something had gone wrong when, after the test, his brother was asked to wait for the doctor to see him, and that it would be several hours. And yet when I ask Brother if he knows what he's about to hear, he shakes his head. Glancing at him, he looks down to the floor. Irritated, looking like he's concentrating on ignoring the obvious. I look back at his brother, my patient.

-He has HIV.

No response

-Do you know what that means?

He says yes. But the way he keeps his distance from his brother, my patient, the way he won't make eye contact with him, makes me think this could be trouble. My patient is 17 and frail, newly diagnosed, and dying in front of his family's eyes. Brother is a year older, and already seems irritated at what he's hearing. I wonder if he holds any resentment towards his brother who has always been smaller, thinner, sicker.

"Mae, can you help? Can you tell him that he has nothing to be afraid of? Can you tell him that his brother needs his help?"

My translator starts slowly. She looks at Brother. She looks at his father. I hear the words H-I-V. 29% of the population is infected, the third highest rate of infection in the world. It can't be allowed to be a mystery. She picks up steam and starts sharing information. At this point, my translator understands the nuances of care and disclosure much better than I do. She's done it hundreds of times by now. So I turn my back to that conversation and start taking a look at my patient.

I knew it was coming, but in the back of my mind, I really doubted whether something like this was possible. When he first walked in, he was outfitted in what I later counted as six t-shirts, some long sleeved, and a track jacket. Where they to keep him warm, or to hide his frailty? He's so wasted, barely a shadow.

I don't even have the heart to ask him to lie down. I start with his scalp. I run my hands through his short hair. No bumps. No loss of hair. His ears are clear. His eyes are bright, no sign of corneal clouding. He opens his mouth. There are missing teeth, and the ones that stuck around aren't in great shape. His tongue coated in white, except the middle. It's a streak of beefy red running straight to the back of his throat, where its meets up with patchy white covering his palate and the back of his throat.

Oroesophageal candidiasis. Its a fungal infection that is similar to when babies get thrush. Only in this case, it extends all the way down your esophagus. It makes swallowing an agonizing experience, and it might explain why my patient is wasting away. It hurts to eat. It hurts to drink. It hurts. It's an AIDS defining illness. It drops you down to WHO category IV. It means that we'll be moving fast.

His heart is pounds and his lungs are clear. My stethoscope balances from one rib to the next, as there is simply no flesh between the two to support the instrument.

When my hands slide to his stomach, I start to wonder if he thinks this is a joke. His belly is nonexistent, its just a valley that plunges down between the relative peaks of his rib cage and matching hip bones. I push down, feeling his abdominal aorta thump against my hand. If I pushed harder, I have no doubt that I could have felt his spine through his belly.

His joints look like broom handles plunged into grapefruit. He's bone, and joint, and very little else.

"Do they understand?"

Mae, (a term of respect reserved for women), tells me yes. She has spent much of the past half hour detailing the nuances of his illness. She has repeated the entire conversation that was shared with the father and his son just after his diagnosis. It takes time for news like this to settle in, and thankfully, its nearing the end of the day, and Mae and I have enough time to sit down and detail the information that his family will need. She assures me that Brother understands that he is not at risk.

"And will he get tested?"

Brother flashes me a smile, and gives me a most definite shake of the head, as if to signal that the case is not up for discussion. There's a good chance that he's not infected if he's this old and looks that healthy. But there's no telling. Here, as in most other places, there's a hesitation for men to receive testing, as if ignorance will provide the protection they need to escape an illness that every third neighbor is infected or dying with.

I refocus my attention on him. I look him straight in the eye. With Mae's help, I tell him: You have HIV. There is another infection in your throat that's making it difficult to eat. We're going to treat both infections. One will go away easily. The other one will stay with you for the rest of your life. But we can treat it. We can give you medication that you'll take every day. And even though it seems impossible, I promise you, you won't be sick much longer. You'll start to put on weight faster than you ever have. And soon, you and your brother will be the same. I know he doubts this. I'm sure he's entertained the notion, what it's like to walk around as his brother. And soon, we'll see.

I'm embarrassed when I ask him to strip in front of his family, but with camera in hand, I take pictures of his frail body. We need this for documentation. But more importantly, I need these pictures to show him, how in just a few weeks from now, he's made progress. So that years down the line, when he has a moment of despair and questions whether he can take one more pill, after a lifetime of pills, he'll look at his old pictures and remember how far he's come.

It's been a truly hard week for me. Distance, and illness, and so much more. I'm trying so hard to stay focused, and to stay well. Sometimes I start to waver on how long I'll be able to stay here. It was supposed to be eleven months, then eighteen, and now, sometimes I wonder if I'll make it three. But if I can see this one grow, then I'll have one less reason to question my being here.