So, as our time in Uganda comes to a close, I thought I would update you all as to what exactly I have been up to at our work, Kamwokya Christian Caring Community (KCCC). Mostly, I have been learning to be patient, to tolerate having things happen very slowly or not at all, to understand that not everything is fixable (in fact very little is) and I have been seeing a bit about how medicine is practiced in Uganda. Our mandate from AJWS was that we were not really sent here to do direct service and that we were to come up with something that would be self-sustaining so that it could continue when we are gone. Although KCCC sees many children in their general clinic, the staff was not particularly interested in feedback from a pediatrician, unfortunately. I do see kids once a week on my own and often make it up as I go along, learning about malaria and many other tropical diseases. I also help out in the weekly immunization clinic, mostly weighing babies and plotting their growth as well as trying to help the staff with lessons on normal growth and development or breastfeeding or nutrition. The clinic is held on the side of the church that the organization is founded from and up to 100 women cram into wooden pews that have been brought outside. They have immunization cards given to them by the ministry of health where their growth and shots can be tracked if they are lucky. Some women instead carry around a little paper notebook where things are recorded. None of the weights are ever plotted so its very hard to tell if the kids are growing properly or not, but this is the extent of well-child care for most Ugandan children and the immunization campaign is fairly successful. Although we see plenty of adults on the street with polio, it is rare to see a child with the disease. The babies are delicious and most of them, thankfully, are fat and healthy looking. We weigh them from a hanging scale similar to the one in the grocery store on which you would weigh fruits and vegetables. So amazingly cute!! Usually it is so chaotic with 100 women and babies that no teaching gets done, and the language barrier is hard, but we have been able to do some sessions and hopefully the community health workers will continue with the teaching.
The main bulk of my time here has been helping KCCC start a program for the prevention of mother-to-child transmission of HIV, or PMTCT. If PMTCT works properly, it can be 99% successful and babies can be born to HIV-positive women and themselves be HIV-negative. The basic steps are different than they would be in the US where we would do a cesarean section and tell the mom not to breast feed, as those are 2 ways to avoid transmitting the virus. Per the WHO in a developing country where most women deliver at home or in a random clinic and clean water and formula are a dream for most people, there process here is that: 1)the mom is on the proper HIV medication during her pregnancy to get the amount of HIV virus in her body as low as possible, 2) during the delivery the mom is given HIV medication if she was not previously on drugs and the baby is given HIV medicine directly after birth and then for one week afterwards to decrease the risk of having passed through the birth canal, and 3) the mom breastfeeds exclusively and continues on her HIV medication and does not mix in other feeds.
The program at KCCC was supposed to have started several months ago and was limping along with no direction, no clear understanding of what they were doing, no records or tracking and no buy-in from the staff when we got there in November. It was not until January that I had any clear sense of what to do, how I could help. Up to now I have written a budget and designed numerous work plans for the year. The organization is required to compile masses of reports for their donors on a monthly basis and everything is supposed to be accounted for, down to any notebook purchased. The bureaucracy is such that everything happens REALLY slowly (as those of you who know me, you understand that this is hard for me!) and there is often triple work to make all the reports. The donors dictate everything they want PMTCT programs to be achieving at all their funded sites, regardless of whether the activities are relevant for the community or the particular clinic. Most of what we are doing at KCCC is mobilizing in the community, spreading the word that we can prevent mothers from passing HIV along to their children during pregnancy, and making sure that our clients who are HIV-positive are on the proper HIV medications and that the babies get the drugs once they are born and that breastfeeding is done safely. It is actually a huge task and many things fall through the cracks, but here it is more about the general direction a program is taking, rather than details--which is, again, hard for me.
On a daily basis, this means that I am sometimes doing something as simple as making labels and cutting them and sticking them into a book that is used to record the names and information about our pregnant clients and babies. (Everything is recorded in these massive books and using an Excel sheet on the computer is a totally foreign and impossible concept, so information is missing or re-recorded and it makes it challenging to know what you are really doing.) Other times I am seeing clients with the doctor who is the head of the project, counseling mothers about medication and breastfeeding or the importance of delivering their babies in a medical facility as opposed to at home or in a "clinic" somewhere in the bush. Other times I am running a workshop or a training session about PMTCT with the staff of community volunteers that go daily into the field and meet with clients. I have been connecting with other local organizations, the Ministry of Health, the main hospital, Mulago trying to connect KCCC with these other resources for nutrition and pre-natal care. My favorite thing has been starting a monthly support group for mothers and pregnant women. The concept of a support group as we know it where people share their experiences and self-direct is not here, and it is more like a lecture session. The first group was awesome: 18 women and their babies or pregnant bellies attended, the counselor talked about disclosure of HIV and then we all had snacks (the staff ate before the clients) and watched 3 of the community volunteer staff members lip synch to some Christian songs in Lungada. In between, the women did get a chance to talk about how hard it is to disclose their HIV-positive status to husbands or partners who will leave them or beat them or stop supporting them, even though the likelihood that their partners are also positive is almost 100%. They also talked about giving their babies tea because they are not breastfeeding and cannot afford milk or formula. It was both amazing and heartbreaking, like so many experiences we have had in Uganda.
Three times I have been told that the funding for the project would be cut and I have visited the local offices of our donors to see that the money can be secured. The budget for the entire year is only $2500 (not including the drugs that we provide for clients) but the expectations of what we are supposed to do with that little money are pretty large. My low point was when the doctor who I am helping (or some might say pushing into doing this work) told me that he was relieved when they thought that the funding might not come through. I realized that maybe I want this program to work more than they do. The staff who were assigned to work on the project are already busy and a bit difficult to motivate. But the truth is that this place has gotten over 2000 people on HIV drugs and now these clients want to have babies and one of the best ways we can be effective in preventing new infections is through this project and I think that when we leave, even if they only hold onto a few things that we have started, maybe, just maybe, we will prevent some.