Friday, December 30, 2011

Bearing Witness

 Life has been so chaotic with the addition of the twins and their caregivers that I have not documented some very significant recent events in our lives. As always, my intentions are good, and so I aspire to telling the story of how Dave single-handedly apprehended a criminal and delivered him to justice on Thanksgiving Day (seriously), or how the “LSPCA” took our beloved, perfectly healthy kitten and accidentally killed her on Christmas Eve.  Both good stories, and I hope to tell them in detail in the future, but today’s events are motivating me to write more immediately.
I have been depressed since I last wrote.  I have been missing home, and had some virus that left me feeling exhausted and with low-grade fevers every night for 2 weeks.  The fear that I was dying of some indolent illness (which, as Dave pointed out to me, I have been actively doing since we met 14 years ago) coupled with the unrelenting heat and daily obstacles of life in Lilongwe, superimposed on the reality of Christmas without my extended family, left me listless and grouchy.  I rallied briefly a few days before Christmas, but the death of our little cat, who had gone to the vet to be spayed and ended up dying under their care, set me back.  The children were devastated, although we did not actually tell them that she died.  Instead we told them that she had escaped from the Cone of Shame she had been placed in after her surgery, broke out of her cage, and set all the other cats free.  Despite our efforts to turn her into a feline heroine, they were heartbroken on the day before Christmas.  This led to a general meltdown about how Africa is a horrible place to live, and how we are horrible parents for dragging them here, and how this was the worst Christmas ever.  Having tried to talk myself out of exactly that opinion for a few weeks, I was unable to say much except that I loved them, I was sorry, and we were just trying to do the right thing.
Christmas Day was good, and the presents I had hoarded for months in our closets were a great success. We spent the evening with our neighbors stuffing ourselves with good food, and my spirits began to lift.  Then, the day after Christmas, I had to cover the wards for 2 days, and I reverted back into full-blown sadness.  I won’t bore you with the details of the suffering.  Needless to say, I have images in my head that I will carry with me forever. 
Thokozani is a 10 month old little boy (actually, born 4 days before our twins) who was in Kennedy’s same bed in the Nutritional Rehabilitation Unit.  He weighs about 8 lbs, and looks like a skeleton.  5 months ago I may have been overwhelmed by his cachexia, but experience has altered my perception so that, while startling and scary, I have seen worse.  The sign out that I got from my colleagues who had been covering the hospital in the days before me was that his mom was very sick, and his dad was dead.  Mom had, in fact, been so sick that the previous Baylor doctor had given her IV fluids and started her on some medicines the day before, despite our general policy that we care only for sick children, and leave their caregivers’ health to our adult medicine colleagues.  When I encountered her she was laying alongside the baby, slowly picking at the edges of her chitenge (the ubiquitous printed pieces of cloth which all women use as skirts, to carry children, etc.).   I am sometimes at a loss for words to use to describe the people I encounter in the hospital.  It is astonishing how thin these patients are.  I am reminded of the pictures I have seen of prisoners in concentration camps during World War II.  Their hollow-eyed, vacant expressions, their sharp cheek bones and skeletal limbs are the same.  The smell of the hospital is always cloying, but the odor around her bed was almost unbearable.  Flies were everywhere.  The way she picked at her baby’s hair, and her nails, and the cloth, reminded me of my dad when he became sick with brain cancer and was dying.  I have seen it in other patients as well, and although I do not understand what it means or why it occurs, this obsessive, distracted picking often seems to signal mental and physical decline.
The women in the beds around her were worried.  The mom was refusing to eat.  Although she continued to feed the baby, she left her rations untouched, and did not appear to be taking the medicines my friends had left for her, nor did she appear to be giving medicines to her baby (in the hospital the moms are responsible for giving most medications).  When I tried to talk to her she appeared, to use a phrase I have heard internists employ to describe elderly patients, “pleasantly demented”.  She barely spoke above a whisper, and her answers to our questions were often confusing or contradictory.  She was almost childlike in her demeanor, and she looked down at the bed and pulled at invisible strings on her skirt as she was reprimanded by the women and told to eat so she could care for her son.  I looked at Thokozani’s file.  He had lost weight since admission, and had had diarrhea the night before.  The NRU has a 25% mortality rate for HIV negative children, and it is as high as 50% in HIV-infected kids.  She was positive, the baby was exposed; the place is a cesspool.  It was only a matter of time before this mama and her baby died.  She seemed to have already become resigned to this fact.
I devised a plan, and discussed it with Dave. So much of what should happen in Malawi fails.  So many well-intended plans go awry; so many good programs are not sustained.  So many kids who you hope and pray will survive die. One begins to be afraid to hope.  And so I held my breath and had no expectations as I called the woman who directs the Crisis Nursery where I had left our boys a few months ago and asked if this starving baby could come there while his mom sought help.  God bless her; she readily agreed.  Dave assured me that the baby’s mom could be admitted and cared for at Partners in Hope, the clinic where he works, which thankfully has its own small inpatient unit. The clinic also has most of the labs and medicines necessary to provide quality medical care to impoverished patients (unlike the government hospital, which provides almost no labs and has few medications and frequent stock-outs). 
So Wednesday, my first day of vacation, I went back to the hospital and collected Thokozani and his mom.  She gathered her belongings into a small cardboard box and a few plastic bags, and put the baby on her back. Everything she owned was soiled and wet and reeked of urine and excrement.  When I looked at the sweet baby lying against her I saw that the chitenge she had wrapped him in had feces all over it, and that it had gotten on his little face.  I guess it bears explaining that it is extremely difficult to stay clean in the hospital, and although the women can wash their clothes outside in cement washbasins and hang them to dry, the rate at which things become soiled often outpaces their ability to do laundry while caring for their sick children.  Usually the families have only one or two pieces of tattered clothing and a few pieces of cloth to use as blankets and diapers.  The cloth is not very effective at containing stool and urine, and when babies are sick and having frequent diarrhea or vomiting it becomes almost impossible to keep them clean and dry.  This mom could barely sit up. Cleaning her clothing was out of the question.   So, sitting in the front seat of my car as we drove to the nursery together, I had to breathe through my mouth to keep from being nauseous.  My window was unrolled, but it seemed rude to ask her to unroll hers, and she was probably too weak to do it if I had asked.
At the nursery I was met like an old friend, and soon the beautiful women who work there had taken the baby, bathed and dressed him, and fed him porridge.  The skeletal mother was interviewed by the director and paperwork was filled out. .  The director’s name is Mwawi, which sounds like Elmer Fudd is saying “Malawi”, and is very hard for me to say properly and without smirking.  She is tiny- maybe 4’10’’, and muscular, with high cheekbones and a mass of cornrows ending in a ponytail on top of her head.  During the course of the discussion it was slowly discovered that the mother, whose name is Chrissy, had three other children, ages 10, 7, and 5, whom she had left alone, without any food, two weeks beforehand, and had not  been in contact with since.  A plan was made to check on their well-being on the way to PIH, and Thokozani was brought to his mom to say goodbye.  I was touched by how the caregivers knealt in front of the seated mother, so obviously filthy and unwell, as they handed her belongings to her and offered her phala (like cream of wheat). They appeared humble before her, and seemed honored to be able to assist her. The baby was brought out to her and a prayer was said over them. It was a lpud, frenzied prayer in chichewe that left no eye dry but mine (as I didn't understand it). And, afterwards, for the first time, I saw tThokozani's mom eat with enthusiasm. 
We decided to stop at our house to get Dave, who had a meeting at work and was going to admit Chrissy and make sure she got “tucked in”. While we were there she bathed in our bathroom, and I gave her a pair of scrub bottoms and a fresh chitenge.  Dave got behind the wheel, and we set off across the city and into an area I had never seen. The roads were narrow, lined with stalls in many places, and unpaved. The voyage ended in what looked like a typical Malawian village.  We were, of course, immediately surrounded by a crowd of children, within minutes of opening our car doors.  Not the tearful reunion I had imagined it would be, it was not immediately obvious who among the crowd were Chrissy’s children. They did not hug their mom. They did not run to her. We were taken to the “house”, which was a mud and thatch  structure about 8 X 10 feet. It was almost pitch black inside, despite the relentless sun. The roof had been leaking, and so the dirt floor had become a mud floor, without any obvious dry area.  There was a four foot high dirt barrier between the two “rooms”, and we peered around it to the back space.  The ground was covered with filthy, damp rags of clothing that presumably served as a sleeping area. The anteroom had a few scattered plastic bowls and cups filled with mud and the remains of a meal. We put the children into the back of our car, gave them peanut butter sandwiches (remarkably, they do not look malnourished), and drove through the crowd back toward PIH.
 After dropping off Dave and Chrissy, Mwawi and I set off to find someone to take these children. Unfortunately, the Social Services department is closed. For 2 weeks.  So we spent several hours (and, regrettably, much petrol), driving futilely all over the city asking orphanages if they could temporarily care for this little family while their mother (hopefully) recovered. The problem was that most of these places, run by NGOs and foreigners, are carefully monitored by the government to be sure that they follow all, even the most arbitrary, rules.  And one of the most important rules is that no child may enter a facility without the approval of the Social services dept.  Who was on vacation.  For 2 weeks.  Finally we found a shelter that provides help to children on the streets, but it is, by definition, transitional, and not intended for stays of greater than 1-2 weeks.  So we swore on our honor that the children would be out before January 9th (the day that the Social services dept is due to open). By the end of the day I was dehydrated, filthy, and exhausted, and I collapsed into bed.
I called to check on the baby today, a day later.  He developed a fever overnight last night, with a cough, and vomited 2 times.  This morning I took him to Baylor, started him on TB treatment, had him officially tested for HIV (We will not know for sure if he is positive until 6 weeks from now), got him antibiotics and Chiponde, did malaria smears and a CBC, and gave him an injection and some antibiotics to take home.  I called to see how he was tonight, and Mwawi said he vomited two more times, although she was able to get him to eat a sachet of the Chiponde.  I am worried, and I don’t know what to do.  We are supposed to go to the lake tomorrow morning; the truck is packed and the children are excited, but I am feeling like I need to do something more to help him. Mwawi was planning to take him to the hospital tomorrow if he is still vomiting, a suggestion which chilled my blood. “Not to KCH,” I begged her. “Please, not to KCH.” She assured me that it would be to a different, private, hospital, but I do not feel reassured. I think that we will probably go get the baby, drive him across town to PIH so he can get an injection there, then drive him back home.  I know the children will be audibly disgruntled, but I am willing to endure it.  The added benefit would be that he could see his mama, who may apparently be getting a little better.  Petrol is another issue, but we will deal with that…
Trying to sweep the floor tonight in preparation for our long-anticipated trip to the lake, I hunched over the handle of the broom and was seized with such a paroxysm of heartbreak and anguish for these little souls.  My children saw me crying, and came around me to ask what was wrong.  I told them I just felt sad seeing so many children die.  “Don’t worry, mom,” Eamonn said. “Now they’re in heaven.”
Later, when Dave held me as I cried some more, I told him it seemed so unfair to be forced into being a hapless witness to the illness and deaths of these children. 
“Bear witness,” he said.  Bear witness to the poor.  Use your blog to tell people about these kids, so that their stories will be heard.”
So maybe that’s the point. Maybe we are supposed to be bearing witness. What other explanation is there when there is nothing we can do in the face of this needless suffering?  These children are so sick, and with diseases that we have cures for.  Why do they not come in until they are dying or almost dead?  How can I be expected to care for them, to, above all, “do no harm” when I have to guess at their diseases, often battling so many at one time? Everyone has what I call “The Trifecta” of HIV, TB, and malnutrition, which creates an overwhelming cycle of immune suppression and illness.  Each disease process perpetuates and worsens the severity of the other. And each of the treatments, whether it is medication for TB or HIV, or even food for severe malnutrition, can often make the patient much sicker before they get better.  It is called Immune Reconstitution Syndrome, or IRIS. It is a paradox that fosters distrust in the medical field among impoverished, often rural Malawians.   People who already have little faith in Azungu and our pills see their family members die as a result of the medications they needed to start in order to have had a chance at survival.  And what irony that the cure is the killer?
 So these shriveled, wasted babies with their huge eyes and tiny limbs lie in front of me and die, while I can do little but guess why and how to help them.  It is heartbreaking.   The day after Christmas I saw a skeleton of a child riddled with TB and HIV, who had been so restless with hunger and pain that he had literally picked half his ear off.  Someone (I heard maybe the First Lady of Malawi?) had brought him a Christmas gift, and a little Matchbox car was lying in an open package next to his outstretched arm.  He couldn’t even lift his hand to swat the flies off his eyelids.  He died that night.
 This little boy was on TB meds, and was to start HIV meds soon, but re-feeding killed him first. I’ve heard stories of how the Allied soldiers drove into the concentration camps and handed out candy bars to the liberated prisoners, who died soon after eating them.  Starving people have such significant derangements in their electrolytes (salt, sugar, potassium) that sometimes even giving them rehydration solution in small amounts will kill them.  Their immune systems are so abnormal that it’s like they already have AIDS.  These children are in crowded, hot, insect-infested rooms full of people, a significant  number of whom likely have TB. They invariably become infected with whatever viral or bacterial infection they are exposed to, they develop diarrhea and vomiting, and they die.  “Taking care” of these patients really seems to mean helplessly watching them die.  
And so, here I am, telling the story of Thokozani Lloyd.  I do not know what will happen to him. I will pray, but I am afraid to hope.  I feel responsible for this child’s life, and his mom’s, and his siblings.  I try to assuage my guilt by remembering that mom appears to be doing better, and that the children are now bathed, eating meals, and not livingalone and in squalor. And, even if Thokozani dies, it will be in clean clothes, in a warm bed, with people around him who love him and care about him.  And together we are all now bearing witness.

Thursday, December 8, 2011

Finding Christmas

Sometimes it seems that I am more motivated to write when I am feeling depressed or homesick, so if there is a melancholy slant to my blog, I apologize.  I strongly suspect that my most recent decline in mental outlook is fueled by monthly hormonal variations (read:PMS) and my recent visit to South Africa for a conference on tuberculosis.  South Africa (at least the limited area I visited) reminded me very much of the States.  There were well-marked highways and operational shopping centers.  There was gasoline to be purchased in the gas stations, and the queue didn’t stretch for blocks.  Within 5 minutes of arriving in the airport in Johannesburg I had gorged myself on treats not available in Malawi: sweets and coffee, a Subway sandwich and diet coke fountain soda.  I was nauseous by the time we arrived in Capetown. There I had the dubious honor of going to the largest mall in the Southern hemisphere, replete with a McDonalds and a Toy R’ Us.  I only had about 4 hours to spend in the mall, and spent a portion of the time stunned by the similarity it bore to home. The rest was spent in a near-frenzy of shopping and (more)  eating (food court sushi, frozen yogurt, candy, and more fountain soda). There was Christmas music playing overhead, and the stores were filled with decorations and shoppers buying presents for family.  Maybe it was the Mariah Carey music that put me over the edge, but it suddenly occurred to me how little it feels like Christmas in Malawi.  It isn’t just the oppressive heat.  Maybe it is the fact that, in the face of such ubiquitous poverty, there is no consumer culture. There are certainly a few poor-quality plastic toys from China that have suddenly appeared on all of the shelves of the supermarkets, and the few shops that we patronize have hung similarly low-quality decorations, but the feeling of Christmas seems to be missing.
When I arrived back in Malawi it felt like I had culture shock all over again.  I felt disgruntled.  Our house is in a constant state of utter chaos.  It is about 1500-1800 square feet, and is occupied at all times by a minimum of 7 to 10 people, including the rotating cadre of nannies who help us survive.  There are babies crying, children exchanging gunfire in the living room, children climbing the sofas and raiding the cabinets, and women ironing or washing dishes or sweeping.  It is like a Calgon commercial, but without the big tub full of bubbles at the end (because we frequently have no water).  I would never, even for 1 second, say that I regret bringing the twins home, but the influx of noise and people and work that they have brought with them has been overwhelming and exhausting.  This new chaos, on top of the daily grind of life in the heat and dust, and contrasted with the cozy pictures of life in the States during the holidays that friends and family have been posting on Facebook, has left me with acute on chronic homesickness. 
            I returned to Lilongwe determined to bring the Christmas spirit into the Fitzgerald home.  Saturday we loaded all five kids into the car and ventured out to buy Christmas decorations and suffer together through the special hell that is Shopping Day in Lilongwe.  It was actually the first time we had taken all five of them anywhere except “Two-for-Tuesdays” at Pizza Inn each week.  It went well, despite the not-unexpected need to go to 5 different grocery stores in order to purchase the simple items necessary to sustain our massive household for a few days.  The tree we bought for $70 US at the only “department store” was plastic, but the picture on the box was decent, and I grew excited.  Mostly we had a large selection of brightly colored cheap plastic Chinese Christmas decorations to choose from, but we found garland and tinsel, and even a few small ornaments.
            I worked most of the day on dinner, making seitan from scratch for a hearty stew.  As I was finishing cooking, I asked Dave to start to put the tree together, as I assumed it would take some time to assemble.  Literally 30 seconds later he said, “There. Done”.   I laughed, but he was serious.  The tree is a four-foot high replica of the Charlie Brown Christmas tree, and not just because Dave had forgotten to unwrap and open all of the branches.  It didn’t help when we did.  Last year we filled our living room with a 10 foot high North Carolina fir tree, decorated with the scores of ornaments I have acquired throughout my lifetime.  Looking at this tree, I almost cried.
            That night we put the a/c on really high, to make it feel cold, put some barely-audible Christmas tunes on the iPad, drank some hot chocolate, ate warm homemade snickerdoodles, and decorated the tree.  The children honestly didn’t seem to notice how pathetic it was.  They carefully hung makeshift ornaments from paper gift tags and enthusiastically hurled tinsel at the branches, all the while exclaiming about how beautiful our Christmas tree was.  We bought some spray-on snow and wrote “Merry Christmas” on our glass door, and covered it with pictures of snowmen and presents. Then we sang some of the more boisterous Christmas carols at the tops of our voices.  After the shiny silver garlands and smiling plastic (albeit slightly scary) Santa head were hung on the walls, it actually looked festive.
            Of course our kitten Nahla, considering the tree a worthy adversary given its size, lodged relentless assaults on it throughout the night and into the next morning, scoring significant damages.  We eventually lifted the (unimaginably) more pathetic remains of our Malawian Christmas tree onto a desk and out of reach, and that is where it stands today.  The giant Santa-head on our front door fell off almost immediately (which was OK), but at least some of the garland remains on the walls, despite the countless gun battles that take place in our living room each day.  All in all, the living room reflects my current mood: a little disheveled, relentlessly besieged by children, but determined to be festive.