Towards the beginning of our time here, we met a little boy named Ssemwanga. last year he was hit by a boda boda and sustained a head injury. he had a hematoma that was evacuated and after 2 surgeries he eventually left the hospital. He was lucky in that he appears not to have sustained any lasting brain damage. The surgeons, for whatever reason, decided not to fix his skull and he now has a good size (4 in x 1 in) defect or hole in his skull where his brain is sitting totally unprotected. His head was left that way and when mom inquired she was told that the surgery to repair it would cost 2.5 million Ugandan shillings ($1200) and never went back to the hospital after that. enter Guy and Rusha, rich mzungus, lucky boy.
First, we bought him a helmet to protect his brain now that a critical part of his skull is missing. Its a kids skateboard helmet and he probably never wears it, but we gave the mom many lectures and about half the time we see her, he has it on. Then, I went with her to Mulago hospital in december to meet the neurosurgeon and discuss our options. We were to meet at 7 am at our clinic and she and I were going to go to the hospital together because the clinic is only one half-day/week and you just show up and wait and hope that they will see you before the morning ends.Innocently, I was there at 7. She showed up around 8:30. African time, ladies and gents, even when your child's life is in the balance and some mzungu is offering to help you. The first clinic day was a bit of a failure as the mom had the day of the week wrong and there was no neurosurgery clinic. we did, however, march to the ward and to the chagrin of the nurses, who said that the doc was gone and sent us away, we caught him in the hall and I accosted him with my american doctorness (in a very polite, ugandan manner, of course.) He told us to return in January to his clinic when we would talk about the details of the surgery (mostly i think he wanted us to go away and not come back, but i will give him the benefit of the doubt). at this visit he quoted a price closer to $250, which we though manageable. I was feeling optimistic.
we went back to the clinic a few weeks ago. mom again showed up late to meet me, but she showed and the kid had his helmet as well as a raging fever. turned out he had malaria and a very high burden of parasites and ended up needing IV therapy for 2 days. but not before we went back to Mulago to conference with our friend the neurosurgeon.
what an experience: waiting in a ridiculously crowded area and then being moved to another area to wait again. we were lucky that we even made the first cut--mostly because we had been there to see the doc in December and had gotten a piece of paper stating that he would see us on that day. There was a chart, incomplete, but they could at least find evidence that they performed an initial surgery on the kid. I was actually surprised about that because most people here wander from medical provider to medical provider with these flimsy little pieces of paper with chicken scratch and are lucky if they have any history of illness or physical exam written down but sometimes have the names of the medicines prescribed. If the patient does not have that sheet of paper, docs do whatever they want. I don't even want to start about the inappropriateness of the care so many people are getting or the fact that most of the medical providers are not even trained.
the docs did not show up until almost noon and the clinic is supposedly over at 1 pm. they were
in a "meeting" I was told. I was the only one to get frustrated, it seemed, and i bugged nurses and then an intern when I saw one. what I am told is that most of the doctors at Mulago spend the morning in their private clinics, come to Mulago for a few hours in order to legitimize the measly income they make from the government, and then go back to their clinics in the afternoon. People in the waiting room are so desperate: puking in the waiting room, kids peeing on the floor. there was one bathroom and it was out of order. kids with huge heads from Hydrocephalus (cerebral spinal fluid that does not circulate and builds up pressure in the brain) or Proptosis (eye bulging out). People so weak they cannot sit up on the benches; and it was a shared space with the plastic surgery clinic and casting clinic so there were screams from the kids getting their bones set without anesthesia and very bizarre physical manifestations waiting to see the plastic surgeon. Surreal.
We finally saw the doc and he outlined the fees. He tacked on an operating theater fee that I am sure does not normally exist because when I went to get the invoice, the accounts guy had to go downstairs and ask the doc how much it was supposed to be. I was given a bullshit answer that
it was a new policy since July and it could be waived if I write a letter to the director of the hospital, blah blah blah. the doc also gave me a grocery list of all the supplies we will need to buy: cement for the skull, medicine to prevent seizures after brain surgery, hydrogen peroxide, anticoagulant. the kid needed another head C.T. scan to be done as well. all told it will probably be about $350, way more than this mother could EVER afford (she was able to raise 9000 shillings which is $4.50 from her family.)
So, diligently, we did a bunch of visits to local pharmacies and priced meds. I am sure we got a mzungu price on most things, but the longer we are here, the better we are at bargaining. We sent the mom to get an invoice for the head CT and gave her the money to do it. we got the pre-operative labs (with some minor hiccups)and tada! Today, we showed up, as instructed, to the ward for admission. The mom of the kid has supposed typhoid and had to stop on the walk over to vomit several times. She is taking antibiotics. The kid is terrified every time we set foot in that hospital building because he remembers his previous stay. Of course, the neurosurgeon was nowhere to be seen and no one knew we were coming and we were told that surgeries only happen on Tuesdays and Thursdays and there is probably no hope for getting surgery this week. But, the mom got a bed with her kid in an open neurosurgery ward with about 60 beds split evenly between adults and children, all amazingly silent. The hospital provides you with a bed, a mattress and even a sheet. you bring all the rest: clothes, food for your stay, meds and supplies. they provide water but if you want to boil it, there are people who come and you can pay them to boil it on their charcoal stoves outside. As you enter the hospital, women are doing their laundry on the lawn and the hallways are full of family members sleeping on straw mats with little boxes of their food and belongings beside them. Every face in the room looked up at us and wondered why that child hasmzungu angels accompanying him and they do not and I wanted to stay and know the stories and run out of the room and forget all at the same time.
I got the surgeons phone number from the nurses and will become a daily, pleasantly annoying reminder to him that he needs to do this surgery. We have not payed the operating room fee and were told today that the policy for fees has been "scrapped" since i was last there. We may end up greasing this guy's pocket just to get this surgery done....but we'll see how things play out. we are preparing ourselves for the likely case that nothing will be done at all this week and the kid will go home and we will do this again next week, and perhaps the following week, and the following... I have heard that cases that actually pay money (private patients) and of course any emergency take precedence over other cases. People can sit waiting for surgery for weeks or even months in some cases. hopefully we can help this kiddo and all our hard work and time (and money) are not for nothing.
again, a bit of a sad story, but a reality for life here and an honest portrayal of what is going on for us at the moment.
In other news we ran in the first annual Buganda road race this past weekend and were featured on the Kampala TV and radio stations for it. there were about 2000 participants and only about 6 mzungus. it was an event to celebrate the Bugandan kingdom and there was a lot of pride around it. I was the second lady overall with a fairly mediocre time, but that's okay. I won a prize of 100,000 shillings!!! ($50--but sounds like so much more in shillings, right?) and got a medal. Guy ran his first 10K race ever in blazing heat and did great. The race was slated to start at 7 am and actually started at 8...pretty good for african time. The course was fair and relatively well-policed and traffic was definitely curbed for the event. The pre-race warm ups were some of the best we have ever seen with many push ups (some one armed), hops, jumps, lunges and various other stretching going on. Lots of leggings, very short shorts, interesting shoewear (aqua socks, wrestling shoes), some traditional bugandan outfits and a festive atmosphere to match. We didn't bring a camera but met a girl who promised to send photos and if we can get a hold of the TV or radio station tapes, we will have some great memories. we have been given bugandan names by our friends at work and use them all the time here and people get a kick out of them. We used them during the interviews, and although we missed seeing them because we have no TV, apparently the radio djs were ripping on us wondering how we already have bugandan names after only being here for 2 months! it was an awesome ugandan experience and we were famous for a few hours. Our colleagues at work were very proud and impressed and I am pretty sure that Guy made some breakthroughs in trying to contact people about his project at work because they had seen him on TV that morning.
okay, that is quite long enough and I congratulate you if you made it this far.
I know that the gay bill is Uganda's current international expose and i will refer you to a friend's blog who has had some experience with the issue. He is a lawyer doing legal work in Uganda and a good writer. Check out his blog at: http://avnerabroad.blogspot.com/