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.