Monday, February 20, 2006

Rediscovering Humor

Wednesday I called Lisa and asked her if she would come out to the village with me to see the baby. My initial thought was to go early in the day, to make sure the baby was still alive and then, if it was, to bring Lisa in the evening but Lisa made herself immediately available, saying she had not yet been to a village and the three of us -. Deb, Lisa, and I - headed out to Mbewe. When we arrived we found the grandmother, baby, aunt, and a gaggle of children in the yard. We exchanged greetings and then Lisa unwrapped the little boy carefully looking him over, head to toe. She said that his prominent overriding sutures signified brain atrophy. His eyes were clear but she noted that they did not track movement. She said the thrush sores in his mouth would not improve despite the anti-fungal medicine until his general condition improved. She said his lungs and heart sounded good but that their rhythms portended a bad outcome. (She said his heart should have been beating at a minimal rate of 160 beats per minute but it hovered between 100 and 110bpm). She turned him over and what should have been a chubby brown little bum was bony, pink, and raw.

She said he was wasted and stunted, that his diagnosis was “Failure To Thrive (FTT),” and that he would not survive in the village. He was more active than he was the day I first took him to the hospital, but his movements were lethargic and although at times he grimaced, he never cried. Lisa said either way his prognosis was not very good. She asked if the grandmother would go to the hospital immediately but she said she wasn’t ready. We agreed that I would return early the next morning to take them back to KCH and Lisa would meet me at KCH to ensure that they were quickly and definitely admitted to Ward C, the malnutrition ward. Lisa said she wasn’t sure if the baby would survive the night. Even so, I felt hopeful. I was so grateful that she agreed to come along. I learned a lot from her quick assessment and I felt that life inside this baby was fighting to continue and now at least we could give it a fair chance.

Lisa is great. She’s one of those people who confronts desperate situations with determination, a smile, and a sense of humor. She had Deb and I cracking up all the way back to Lilongwe. She told us the story of an infant she had been seeing. The first time Lisa saw her, the girl was incredibly sick and weak and unable to eat. She gave her treatment and scheduled the mother to return for a follow-up visit. When the mom came back, she was eager to show Lisa how much the child had improved. Lisa asked, “Can she eat?” The mother enthusiastically replied, “Oh, yes! She can eat porridge!” Lisa, then asked, “Is she eating?” And the mother, still enthusiastic said, “Oh, no. There is no food,” quickly adding with a proud smile, “but if there were food, she would be eating!” There are countless small horrifying incidents, and if your proclivity is to cry, the stream of tears will be endless. It’s good to remember that laughter is an alternative.

I returned Thursday morning, arriving in the village at 7am. We were supposed to meet Lisa at 7:30 but in my planning I forgot to account for the village concept of time (or rather the absence of a concept of time) and so by 8am we were just getting in the car to return to Lilongwe. Lisa of course was there to meet us and helped expedite the admission process. The baby weighed 2.4kg (0.5kg less than a week and a half before). She said the trick would be to hope that he wasn’t wasted and stunted to such a degree that his weight for length actually appeared normal, in which case he’d be denied admission. We crossed our fingers and the admitting nurse calculated that his weight was less than 60% of what it should have been for his length – he was in! Lisa said she would also help with formula and that she would be checking in on the baby regularly. I gave the grandmother a little money for food and told her I would be back soon.

Friday I quickly peeked in on the baby and then went again today. He is looking better. His sutures are still prominent but his face appeared slightly fuller and, to his grandmother’s delight, he met and held my gaze as I spoon-fed him formula. Unfortunately his little bum looks worse, he now has a small ulcer forming. Lisa gave them some Vaseline to act as a barrier and the grandmother is using it but, with the constant flow of diarrhea, it’s hard to keep him dry. (This would be one case for those super absorbent landfill overfilling generally wasteful American diapers that I would definitely approve.) The grandmother was happy to show me how much he improved and was eager to know when she could return to the village. What she doesn’t know is that the baby will not be discharged until his weight is over 80% of the norm for his height, which could take weeks. I’m not sure if she sees my involvement with their family as a blessing or a curse. (If she knew she might be there for weeks, I imagine she’d see me as a curse.)
Although the baby is improving, the gain is tenuous and it would certainly regress if she returned. I do feel bad for her though, and slightly (just slightly) guilty about knowing that her stay may be a long one. She sleeps on the cement floor, under the crib her grandson shares with another child, side-by-side with about ten to fifteen other guardians. She has no mat or even a single change of clothes. The ward is divided into various sections by chest high cement walls, which help control the traffic flow, but do nothing to dampen the deafening acoustics of a couple hundred children crying. I imagine she doesn’t sleep much.

Monday, February 13, 2006

Senseless

Margret died in the ICU on Friday night. Another 19-year-old dead. Another motherless baby. Deb went to visit her last night in the ICU and was told that she arrested again and died on Friday. We couldn't find her guardians, they took the body to the village sometime on Sunday, but I did get the name of the village. With a bit of luck we may be able to track down her daughter and find out what we can do to help. At this moment I feel numb. Another life lost and the downward spiral started because a vaginal pack was left inside after suturing a normal tear?! It's infuriating and senseless and unfair. I hope that someone is keeping score of all this suffering and loss. Is there any meaning? any hope? any lesson in any of this?

The little baby boy I delivered a two Wednesdays ago and had to resuscitate, has a chest wall defect and may have some other abnomalities. Dr Mwansambo, the Pediatrician, thinks his heart may be positioned on the right side of his chest. He is still in the nursery in a borderline condition. Wait and see.

Saturday, February 11, 2006

A Week's End

Thursday, Clement called me to tell me that the baby had been discharged and that the two guardians were waiting for me to take them back to the village. I met them at the hospital and the little boy looked a bit better but he is still way too tiny and way too weak, at least his eyes were clear. I dropped them off and promised to return Saturday.

I also saw Margret in the hospital, she was conscious and in the process of being transferred out of ICU to a medical ward. She was so happy to see me (although I think she might be confusing me and Deb but I'll still accept the love), gave me a big hug and wouldn't let me go. I told Deb and she promised to visit Friday night.

This morning I found the aunt with the little one wrapped to her back, just a tiny head peaking over the chitengi. He is so frail. I fantasize about watching him transform into a chubby little boy who will run and jump and scream just for the fun of it. Now, looking at him I hope he will hang on to life. I stayed in the village for about an hour. Long enough to get teary-eyed a few times and long enough to feed him a small bottle of formula. He is still to weak even to suck, I just squeeze a bit in his mouth and wait until he swallows and try not to let him choak. His poor little mouth is covered with sores caused by yeast and the aunt is treating him with an antifungal but I'm not sure if it is improving. I imagine his little immune system is completely overworked, trying to keep down so many small insults without the help of a mother's anitbodies from breastmilk.

There is a wonderful Austrailian pediatrician, Lisa, who works on HIV/AIDS research projects for the University of North Carolina out of Bottom. UNC has had a presence at Bottom for many years and they do help patients who enroll in their studies a great deal but it seems (from my perspective) that involvement with the rest of the population at Bottom has been minimal to known, at least until recently. Lisa comes and rounds on the babies in the nursery at least twice a week now and she told me if there is ever a baby I am particularly concerned about to call her. In the two times I've followed her around the nursery I've already learned so much. Anyway, I'm thinking I will ask her to check on my little village baby.

After I returned from the village I went to see Doreen and Dalitso. They were a soothing vision. Dalitso is a beautiful chubby little 3-month-old boy who is now smiling and cooing. Meanwhile, Doreen is managing to express milk and go to school full-time Monday thru Friday. All in all they are doing great and the chicken Sarah bought them has laid nine eggs. Unfortunately, Doreen did tell me that she did not have any food - I wonder how often that is happening.

Deb just told me that she went to visit Margret, with the orange Fanta she requested in hand, but when she reached the medical ward none of the nurses even knew Margret. Incredible?!! Finally, guardians of other patients in the ward told Deb that Margret had been transferred back to ICU. She found her unconscious back on the ventilator. Apparently Margret started having seizures and very low oxygen saturation (the normal level is 100 but she was around 30).

Guest Entry by Sarah Stone

After reading Joanne's blog and imagining her for months, I got to visit her this past December. I arrived on the day after Christmas. On my second day in Lliongwe, I woke up early and put on Joanne's blue scrubs. We drove to Bottom together - matching outfits and pony tails. The last time Joanne and I were dressed in an identical manner was at a 9th grade volleyball game. I want to write about wearing Joanne's clothes because it felt like slipping on a new skin and shedding an old one.

My Mother and I have been emailing about my trip - so many people have been responding to the emails I sent from Malawi with different perspectives, a lot of words about soul searching and life changing. Mom's perspective has been one that I was expecting - suffering is a human condition. Joanne's mother and I had a similar conversation one night before I left to go to Malawi. Suffering is something I am familar with. I have spent the last several years working with children and families that are invisible to most of America - whether they be in Detroit, Applachia, or East Austin, TX. I often battle with the underlying question of "Why?"
Inherent in this for me though is my struggle to buck back at the idea that suffering and injustice should be accepted at some or any level - that it is just the way things are and always have been and always will be. At the same time I am violently aware that there are many times when all I can do is bear witness so that injustice and pain are not suffered alone.

I feel like this when I read Joanne's blog and I felt this the entire time I was in Malawi. I felt it when I held a baby whose legs were no bigger than my pointer finger and whose countenance was that of an old man. I couldn't get it out of my head as I held him to comfort his cries that he was already tired and so angry that he was just born - it seemed that he had already lived a life of dissapointment and that the flies crawling on his body were just one more annoyance.

My Mom wrote about how she didn't think it would be a life changing experience for me to go to Africa - and it wasn't necessarily - it was more of a life affirming and clarifying experience. I want to live a life that is true. I want to live brave. Living a life of purpose requires that I am clear on what is important to me and what is not and that my ideals and values are reflected in my every day living. My trip to Africa propelled me on this path in a way that hasn't happend for quite some time. I am having the feeling that this is making sense to all of you who have read Joanne's blog. I think that Joanne is the bravest and most true to herself person that I know.

My trip to Africa clarified the following for me:
  • my connection to the human spirit, I have a deeper and stronger sense of being connected to people around the world
  • my connection to how what I use/misuse/throw away is related to the resources that other people have/don't have
  • my connection to living a life that is giving of love to the world; the importance of being more loving and kind is paramount to me after my trip.

I guess that interconnectivity is the largest lesson that I have come back with - this sense that we are all part of something bigger. My trip was a tangible reminder of this. Living in America with all our television and cars and possessions is deeply isolating in so many ways. I wasn't aware of how isolated I had become living in this country until I put on Joanne's blue scrubs.


Sunday, February 05, 2006

Heartbreak

Saturday was overwhelming. I started the day working a half shift at Bottom. The nurses are even more understaffed than usual because half of them are out on a two-week training. Of the remaining few, many are working well over 40 hours a week, so a few more hours of my time is the least I can give. It was a slow morning, even though I attended three deliveries. Unfortunately, the baby of the girl I spent the most time with in the morning needed resuscitation after a very prolonged second stage and failed vacuum; a sad start to the day.

After leaving Bottom I went to Mbewe village to deliver formula to the orphaned baby of the 17-year-old. Deb came along with me this time and I was incredibly grateful for her company. I was planning a quick visit - seeing the grandmother briefly and handing over several large tubs of formula - but, that is not the way it happened. I found the house again without a problem and the baby's aunt welcomed me with a warm smile. Apparently she had been caring for the baby but when I arrived the baby was somewhere with another woman. She urshered us into the house and instructed us to sit on the mat while she went to retrieve the baby.

My heart sunk the moment she placed him in my hands. He was wrapped in two wet chitengis, he was still, and, even though he was a month old on Feb 3, he weighed no more than a newborn. I unwrapped him to examine him in a thin ray of light that filtered though the slats in the wall, and saw greenish pus crusted over his eyes and a lightpink rash sprinkled over his body. I could see his ribs with each of the infrequent breaths he took and touched his sunken fontanells (a sign of dehydration). He was slightly febrile and when I wipped and parted his eyelids all I could see was red. I asked the aunt how long he had been like this. She said his eyes had had pus for three days but he had not had diarrhea. I asked her to prepare some formula which she did immediately (she said the other cans had finished so I'm not sure who was feeding him or what he was being fed). With obvious difficulty he managed to swallow and suck a bit. After he took about an ounce, he wiggled slightly and then unloaded a lot of diarrhea. I told the aunt we needed to take him immediately to the health center. She looked distressed and I have no idea if it was because I was taking her away from other chores and children, or if it was a lack of money, or if she resented this extra-mouth. I can only say that it broke my heart to find this baby so close to death in the village and no one seeming concerned about his rapidly deteriorating health.

As we loaded into the car, the grandmother appeared with bright eyes and a big smile, took the baby in her arms, and also got in. At the health center the nurse told us we would have to take the baby to the hospital in Lilongwe. She weighed the baby, he was only 2.7kgs (5.9lbs). She told me that the prognosis wasn't good. The aunt seemed hesitant about accepting the news of a trip to Lilongwe, but the grandmother said she was ready and I heard the nurse telling the aunt something about being grateful for having care and transport and that the baby was dying. We returned to the house for the cans of formula, the aunt decided to come along, and the four of us set out to Lilongwe.

When we reached the hospital we were able to find a clinical officer to attend to the baby right away (right away after asking a handful of nurses). He wrote out a treatment plan for neonatal sepsis and dehydration, and told us the baby would be admitted to the nursery. Just as a note, there is no clear linear flow or direction given on how to move from being examined to admitted to the treatment rooms to the nursery. There are many benches along the hall outside the ward rooms and by the nursing station and Deb and I just had to keep asking everyone we saw for directions (which were incorrectly given multiple times) and for assistance, which was also reluctantly and slowly given. I am certain that if we had left before the admission process was complete, the family would have remained waiting on the benches for hourse before anything happened. With our insistence we were able to insert a nasogastric feeding tube and took the baby to Children's Ward C for a feeding.

As we rounded the corner to Ward C, I whispered to Deb that we were entering a haunted house. I do think that is a pretty apt description of the ward, low lights flickered on and off while the screams and cries of many children echoed off cement floors, walls, and ceiling. Thankfully, in Ward C we met a very nice accomodating nurse who immediately helped up prepare formula with boiled water (although to my horror, she added tap water to cool the steaming formula). Our little boy finally had a much needed meal and as the formula went down his tube I turned to my neighbor on the bench and saw a father holding his 3 to 5-year-old child (very difficult to determine the age). The child was only a skeleton and the eyes were sunk deeply into the skull. It's an image I'm sure most of us have seen on the television, but it is entirely different to sit next to a child dying of starvation and know that a meal awaits you and that you rarely even experience hunger pains. Of course problems on many levels contribute to and finally culminate in the death of a child from starvation, but to know how little a child requires to preserve life and see (really see) that the world has failed to meet that very humble need is devestating.

From there, and with Clement's help (who joined us along the way), we found the nursery and recruited a nurse's aid to choose which child our little boy would share a crib with. The nursery was full but babies are sometimes placed two and three to a bed; their mothers or guardians sleep on the cement floor next to them. Knowing that they were settled, we left the floor. On our way out we stopped in the ICU to visit Margret, a 19-year-old who had delivered at Bottom via a normal vaginal delivery two weeks before. She had a tear and whoever sutured it left a pack inside her vagina. Several days later she returned septic and then sat on the ward until it was determined that she would need to be transferred to KCH for a laporotomy. Friday got her laporotomy and the diagnosis of sepsis was confirmed. By that point she was so fragile that she was admitted to the ICU and put on a ventilator. The morning she was transferred she gave both Deb and me hugs and kisses and told us to visit her and bring her cold water at KCH. When we saw her Saturday night she was unconscious.

When I finally got home a friend who was visiting from the States called to invite me to dinner but I just couldn't bear the idea, so I stayed home and cried. Clement and I talked for a long while about suffering, hopefull/hopelessness, purpose and many other overwhelming and answerless questions. That put a little softness in-between me and the painful visions of the day.

Sunday, I went to another village to visit another orphaned child. The mother had worked as a housekeeper for a German expat in Lilongwe and he had taken it upon himself to care for the baby as well as to support the family. I went with him to examine the baby. Fortunately the little girl was doing great and the grandparents who are caring for her clearly shower her with love. The problem is once again that her survival depends on the health and capacity of her already frail grandparents, but at least there is hope.

From there I stopped in at Bottom and found the baby I had resuscitated on Saturday still in a borderline state, responsive to touch and sound but breathing too quickly (no fever). After that I returned to KCH and found the little boy screaming in his grandmother's arms (a good sign). I helped her with a feeding, he peed on my leg, and I gave her some soap and cloths. (Once again his cloths were wet. It is quite apparent that the grandmother deeply loves him but I think the problem is with her, her health, and her ability to assess and respond to the ever-changing needs of a newborn). On my way out I checked in on Margaret again. Her condition was about the same, still running a slight fever, now with pneumonia in one lung, but her nurse was hopefully so I tood that as a good sign. Somehow at the end of the day on Sunday I felt a bit better.