The Stranger in my Bed

I lie in my bed with him in my arms, his wide, wet eyes staring, guileless and unblinking, into mine as I feed him. He is 8 months old and weighs about 8 lbs, the average weight of a newborn. He cannot sit up or roll over. His cry is weak and raspy. But he reaches his long, thin fingers out towards my face and lays his hand on my cheek as he eats, and I am in love.
His name is Kenneth, and I have brought him home from the Nutritional Rehabilitation Unit (or NRU) to try to help him grow and gain weight-really to increase his chances of survival. Perhaps it is a bad omen that, my first week in the hospital on wards, I have managed to bring a baby home. Truthfully I am not even sure how it happened, but here he is, lying in my bed, greedily sucking down a formula bottle at two o'clock in the morning. He is a twin, and the last of six children. His mom died, it sounds as though it was from TB, on September 30th, and he was brought to the hospital by his aunt. I would visit him each day on rounds, and despite his profound cachexia, he would smile endearingly up at me when I talked to him, and giggle when I examined his swollen belly. His aunt, who is only 47 but looks as though she is in her sixties, told me the story of how he lost his mom, and explained that they are now caring for his 5 siblings, in addition to her own 8 kids. Somehow my half-joking offer to take him home with me became a serious conversation between his auntie and my translator, and it was made clear that she would be grateful for the help. My sweet, insane, wonderful husband was not only supportive, but enthusiastic about the idea. And so, last Sunday, I found myself driving with our family, Kenneth and his auntie, and Yvonne, the translator, to his village in the middle of nowhere to discuss with his family the matter of our fostering this fragile little person. We took directions as we drove, in order to be able to find our way home, which read "left at the mango tree", and "right at the giant dirt mound". And then, upon arriving at the village, we sat on a giant straw mat, surrounded by at least 20 kids and an equal number of adults (each of whose hands we all had to individually shake), and talked about this little boy. In the Central region it is customary for the maternal uncle to make decisions about the children's welfare, even when both parents are present. Kenneth's dad is alive, but is very ill, and had left to go back to his home village for care. The uncle agreed, both verbally and on paper, that caring properly for the baby was beyond their capacity, and that we should be his temporary guardians. An elderly woman with rheumy eyes and skeletal hands, who would apparently have been his primary caregiver, kept grasping my hands and thanking me in Chichewa. in fact, rather than resist our request to temporarily provide for Kenneth, we were asked several times if we could also take his twin brother. He looked fairly healthy, however, and I still had some semblance of sanity left, so I gently but firmly refused. We took pictures of the relatives, and one of the twins together. They reached out to each other, and it seemed obvious that they recognized each other. And then we left, and took this emaciated, developmentally delayed, delicate little person home and into our lives and our hearts.
Dave and I had forgotten what it is like to have a newborn, but that is essentially what he is. He eats every 2-3 hours, even through the night, and he is incapable of rolling over or sitting up. His wasted little body is both tragic and terrifying, and when we change his diaper (which is newborn size and floats on him) he cries so hard, and brings his spindly little fingers together to wring his hands in helpless desperation. His upper arm circumference is, without exaggeration, the size of Dave's index finger. We are treating him for TB, so we have to give him his medicine every morning, and he has a food supplement called chiponde, which is like peanut butter thickened with oil and milk powder and sugar, that he is required to eat every day in order to help him gain weight. He is not a fan. He much prefers the formula we make, which he sucks down in great quantity, and seems to excrete into his diaper at a remarkable pace.
Our lives have, predictably, descended into chaos. We are fortunate enough that hiring an extra nanny for him only costs about $125 per month, so he is cared for while we are at work without any additional strain on Laura or the kids. But he wakes at 4:30 am, and cannot really be put down for long, and frequently soils the few clothes we have for him. So we are sleep deprived and have more dishes and laundry to do, and we feel like we are neglecting our kids. And yet, when he is well fed and clean he smiles the most beautiful gummy smile, his ridiculously big brown eyes locked with mine and his tapered fingers reaching for my face, and all the sleeplessness and chaos is momentarily forgotten. The Fitzgerald children, who have been generous with both their love and that of their parents, do not forget the inconveniences as easily, and we are anxiously asked multiple times per day whether we plan to adopt him. The truth is, I do not know what the future holds. I am trying to take it day by day. I plan to go with our clinic social worker on Tuesday to the village, to see what his home situation would be like. I am truly conflicted about what is best, both for him and for our family. I know I absolutely cannot take care of 1 year old twins. Life here is challenging enough, even with the help of our housekeeper and nannies (Dave spent 7 hours on line yesterday waiting for petrol while I was home with the four kids. He was not successful.) Yet we know we could never take one baby out of poverty, into luxury, and leave his twin brother at home in the village. We have discussed the possibility of supporting the orphaned children, providing them with mosquito nets and fertilizer and school fees, in short "adopting" their family. But meanwhile, this sweet little boy is bonding with me and with our family as he grows stronger, sleeping in an air-conditioned room in soft clean clothes with a belly full of formula (which cannot be provided in the village without our help and a source of clean water), and it seems as though it is increasingly unfair to send him back home away from all that we are currently providing. I do not want him to bond with me and then lose me, as he lost his mother only a few short weeks ago.
I think I will know better once we go to the village on Tuesday. In the meantime, as I tell the kids whenever they ask, I am waiting for God to tell me what to do.

A lesson

I love Malawi.
Yesterday my children were sick, and I was worried about them. Nothing serious, but low-grade fevers and low energy, and I wanted to be with them and tend to them. Luckily, clinic wasn't busy and we finished early. I did not have the car, however, as Dave had dropped me off in the morning. Most days I walked, but that morning. I frequently walk or jog the commute between Baylor and home, but that day I had thoughtlessly failed to plan ahead, and had not brought comfortable walking shoes. I called Dave from work, already knowing that he probably would not be ready to go for quite some time, but wondering if we could make a plan so that I could get home to the kids as soon as possible. There was no answer. I tried again. And again. I became irritated that he was not picking up the phone, and grumpily set off in my highish-heel work shoes in the hot afternoon sun.
The streets and "sidewalks" (I use this term VERY loosely) in Lilongwe are uneven, pock-marked dusty orange paths, and as I stumbled the 3 miles home, my frustration and anger grew. Why do I always have to figure out how to get home? Why does Dave always get the car? Why the @-/?!$ doesn't he ever answer his phone? Why the @&$?! cant Lilongwe have some more decent paths to walk on? My dress was sweaty beneath my backpack, my face was burning in the heat, and my
ankles were twisting beneath me as I dodged the vendors in the markets and the cyclists who challenged me for space on the path.
"Good afternoon, Madam," I heard from behind me, and I lifted my head from my disgruntled inner monologue. Passing me on my right on a make shift, hand-operated bicycle-wheelchair of wood and rusted metal, came a man with no legs.

Ugh.

This afternoon, for the first time in the nine weeks since we moved to Malawi, it rained.  It does not typically rain at all until November, so the sudden downpour was certainly a surprise.  It was cool and refreshing.

Today was hard.  I am in the wards again, and this time I am alone, except for the translator who assists me and a medical student who is visiting from University of Pennsylvania.  The first thing that I notice each day as I enter the hospital is the stench.  There is, truly, no other word for the smell.   It is the odor of urine and sweat, and it seems to hang in the air like a curtain that slaps you in the face as you enter the building.  The wards are overcrowded and chaotic.  There are no bed numbers or charts.  To find patients we shout their names, and if we have trouble or someone is missing, we often ask their neighbors.  Sometimes they have died, other times they have simply left; occasionally we never find out why they have disappeared.  The sinks are without soap, and are often crawling with insects, which can also be seen scurrying across the floor or climbing the walls next to the patients’ beds.  It is almost unbearably hot, and the children sweat as the mothers fan them with their chitenges (colorful clothes they use as skirts or to carry babies) to keep the ubiquitous flies from landing on their mouths and eyelids.   One nurse is often responsible for 50 to 100 patients, and there are no meals provided unless families bring them in.  The charts consist of paper records of the medicines ordered, on the back of which the clinical officers scribble their notes in no discernible order.  I do not know what is lost in the translation, but histories from patients are often very difficult to obtain, and it can feel like torture to stand in the purgatory of the ward, dripping in sweat and trying not to breathe through my nose, as I search through the masses of paper and repeatedly ask the same questions in order to figure out what has happened to the children to bring them in. 

My favorite part of pediatrics is the children.  I love to interact with them, comfort them when they are scared or sick, and play with them when they are well.  Perhaps because I do not look anything like the people familiar to them, or maybe because every time they see a Mazungu they are stuck with a needle, the children here do not like me.  When I was walking home from work the other day and passed a little toddler on the dusty street she actually screamed and hid in her mom’s skirts in terror when I smiled at her.  The kids on the ward cry each time I approach them, and are not placated by the toys or stickers I bring with me.  It is not only depressing, it makes examining them very difficult.

Once I have muddled through the history and tortured the child with a physical exam, I need to decide what on earth is going on with the patient.  There simply are no tools.  The X-ray machine is perennially out of reagents.  The only lab test that can reliably be ordered is a CBC (looking at white and red blood cells), which is not all that useful.  If I am able to come up with a diagnosis and want to give medications, it is usually the mother’s responsibility to try to get them from the pharmacy and give them to the child.  Most of these women do not have a primary school education, and none of them speak English.  Although I am always accompanied by a translator, for some reason much of what we spend time carefully explaining to the moms does not happen until we have asked and explained for several days in a row.  Especially compared to the moms I have worked with in the States, these women seem so passive to me.  I don’t know if they don’t understand how sick their children are, or if they do not have faith in the medicines that we are advocating for, but it is so frustrating to have worked so hard to come up with a plan only to find that nothing has changed when I come in the following day.  There is one girl on the ward who has a tumor in her bladder which is bleeding (it has been there for a long time, and I do not know why no surgery has been performed yet, but it is due to happen this week).  She came in with a hemoglobin of 2.2 (for non-medical people that is UNBELIEVABLY low).  She was transfused, but because she is still bleeding, it is now only 3.7, and she is pale and weak, with an elevated heart rate.  I wrote for a second transfusion, but when I came back to ask mom how she was I found out that it hadn’t happened.  In the US it would’ve been an EMERGENCY.  Here, it was ignored.  I had to plead with a passing clinical officer to help me to get it done, and I do not know if he was able to.  If she is not transfused, I do not think she will live to have her surgery in two days.   Another child came in with anemia and severe malnutrition.  He was transfused, but he was so weak that the blood put him into heart failure.  He needs nourishment.  I asked the nurse to start the refeeding program, but when I returned in the afternoon she told me she had been “too busy”, and that perhaps she would get to it tomorrow.  This child is emaciated and in obvious respiratory distress, and would be in intensive care in the US, but here he languishes without even getting nutrition.

I feel frustrated and tired and ineffective.  I do not know how to make the system better.  I do not know how to use the system that exists to help make these kids better.   I am tired, and I have only been here two months, and it is not even malaria season yet.  For the first time today, I wanted to go home.  I miss being in the ED at Moses Cone, where I had a team of excellent nurses who worked with me to provide compassionate care to children, and they usually got well. 

When I got home, the electricity was out.  Eamonn was in a tizzy because he has a "market" tomorrow at school, and he is responsible for baking 75 chocolate chip cookies to sell, which we obviously could not do without power.  So, filled with angst and frustration from the hospital, I switched to mama mode and we threw the dry ingredients together as I phoned friends to see if other parts of the city had power.  I then loaded all of the ingredients into the car and set out in our giant truck, only one windshield wiper working, the windshield opaque with fog, and tried to navigate the pitch-black streets across town.  On the way, as I narrowly avoided being hit in an intersection, Dave called to say that power had been restored and I returned home in time to bake several dozen cookies.  Tomorrow I go back to the ward to see who has survived the night.

At least it rained today.