Ssemwange Mirazimu update

Remember the little boy with the hole in his skull? Ssemwanga Mirazimu? Well, before we get too far from Uganda and things get lost in the shuffle, i wanted to give an update about our little adopted boy.

I think the last time I wrote, he was sitting in Mulago hospital waiting for surgery and we had bought the supplies. This was back in January. There was a week delay from the original time we were supposed to show up because the operating room for the neurosurgeons, which are only available to them 2 days each week, was closed because a visiting team of cardiac surgeons were coming to the hospital. So, everyone was put on hold. We did get admitted, but unfortunately, during that hospital stay, after about a week, our boy was sent home from the hospital, actually, because he got a fever. I mean, why would a kid with a fever stay at a hospital to get treated?! He was told to return in one week's time, and after being treated for malaria by an outside clinic, we all trekked back to the hospital. When we arrived back, the pediatric neurosurgery ward was completely full with the aforementioned types of tragic patients, all waiting. This is the theme. I met mothers who had been there for 3-4 months, hopeing to at some point get a chance to be operated on. The problem is, the docs are only there a few hours each day (because they are otherwise at their private practices that actually pay them money) and the operating room time is so infrequent and the neurosurgery cases can be so long that only 1 or 2 kids get operated on in a day. Then there are the emergencies. Given that Mulago hospital is the only referral center for a country of 30 million people, it begins to make sense why so many are just sitting around.

The long and the short of it is that we were not admitted the next time we showed up. The ward was full. The nurses balked. My doctor friend (the surgeon) was willing to squeeze him in, but his partners were upset and when push came to shove, when I finally confronted them, it became clear that the surgery was never going to happen there. Our kid has a big problem, yes, but he is healthy, he is not in any acute danger, and he could not just jump the line of those who had been sitting for weeks. For many reasons, this would not work.
All this took several hours to sort out, up and down stairs from the ward to the clinic, talking to all the doctors on the team, being as graciously pushy as I could. But we were not finished. I was not about to give up...
Our surgeon, Dr. Kiriabwire, who had become my go-to person and seemed to be responding to professional courtesy and praise, thought that there might be a plan B when I asked if there was ANYTHING else we could do. He said he would contact the hospital where he has his private practice, International Hospital of Kampala (IHK), to see if there as any way to do the surgery as a charity case. We had a few more weeks of phone contact (ie, Rusha calls every few days to politely ask how things are going) and lo and behold, he said that his partners were in agreement that they could do the surgery at IHK!
The last week of our time in Uganda, really drawing it out to the very end, Ssemwanga and his mommy Sarah and I met at the taxi park in downtown Kamapala, easily the craziest, most crowded place I have ever been in my life. We found eachother and made our way to this fancy private hospital. Sarah could not believe how organized the place was: you registered and had a card with your name that could be found again, you were sent to a triage area to get vitals done, you met with a doctor who did a basic history and physical, you got labs done right there, and finally you went to the ward. We were put on the Hope Ward, a place for the hospital to care for patients who would otherwise not be able to afford their care. The hospital was quite modern with nurses on the floor full-time (unlike in Mulago where no one is there at night) and the capacity to take vitals, meals for the patients, bedsheets and clean bathrooms, doctors on call and reachable should anything happen... She was in total disbelief and was obviously uncomfortable in that environment. She had spent the only money she had to get her hair done before the hospital stay--one cannot show up at such a place without a new hairstyle! After a full day of logistics, we established that the surgery would take place on Saturday (the day before we were leaving for the west of Uganda) and I left Sarah to wait for a day. She did not want me to go and called often to ask for help. One time, when I asked he what was wrong, she said that she needed sugar for her tea. I fear I created a bit of a dependency problem. (She also asked if Guy and I could pay for the school fees of her other boy.)
So, the story ends happily. The surgery actually did happen. I swear, we were not sure it would until it did. We got a nice gift for Dr. Kiriabwire and we went to see him post-op and it was really one of the best overall experiences I had in Uganda. To see something through and have it work was so rewarding and rare. It will be hard to follow up on this guy. I talked to the mom, Sarah, on the phone from western Uganda and found that he was home and had already had a follow up with the surgeon and that all was well. She has no email and wanted my phone number in the US, but hopefully through some of our friends at the clinic at KCCC, we can follow her a bit and see how she and Ssemwanga are doing. He will not remember much, but we hope that this helps him to grow up and have a full life.