This past week started out amazing and unfortunately took a turn for the sad and heartbreaking. On Monday we were able to locate 30+ school children that had missed their follow up appointments and had them come to clinic. Most of the kids have not been seen in almost two years and I am still stunned that we were able to even find them. I think the biggest factor surrounding these children not returning to the clinic is a lack of understanding. Most of the children we were searching for have borderline disease meaning that they do not need monthly injections, however we need to follow up with them every year to make sure the disease has not progressed. Once they hear “you don’t need medication” it appears that they tune out the rest of the conversation. We started giving them scheduled appointments for next year so hopefully the turn out will be much more positive come next September.
On Tuesday we continued to see more patients, one of which was a 7th month old boy with Truncus Arteriosus. This condition would be corrected within the first few weeks of life in the US with a relatively high survival rate. The fact that this child wasn’t even brought to a cardiologist until he was 7months old just reminded me why I am here and why our next project is centered on increasing the availability of cardiac services in Uganda. The surgery to correct this abnormality is complex and cannot be performed in Uganda currently. There is an organization that sponsors children with Truncus to go abroad for surgery however they usually take newborns because the survival rate is much higher. This family, like most families in Gulu, simply does not have the thousands of dollars necessary to apply for passports and fly to another country for the operation unsponsored. Being placed with this organization would have been their only hope however it is too late at this point. This is this mother’s only child and she was sent home with a few cardiac drugs and no hope.
On Wednesday, we held our routine children’s clinic and enrolled a few patients into the RHD registry. We were getting ready to head to a local school, when Rose came running into the outpatient cardiac room to tell us that one of our patients had passed out shortly after receiving her penicillin injection. At first, with the way Rose described it, I thought she simply passed out because of the needle (which I may or may not have done before). I was 100% unprepared for what I saw when I walked into the room. Jennifer, a 14 yr old RHD patient, was unconscious and not breathing on the floor. I put my CPR certification to use and started bagging her while Twalib did compressions and the nurses administered all of the drugs that Twalib was rapidly calling out. Despite our efforts we were unfortunately unable to resuscitate her. Even typing this story makes me feel sick to my stomach. Every time I experience something like this I tell myself that it can’t get any worse but somehow it always does. This was by far the most heartbreaking experience I have had to date and something I will never forget for as long as I live. Jennifer has been in care in Gulu for over a year and I have known her since March when I met her at an appointment. She was from a very poor family in a village far away, which definitely hindered her ability to get the care she needed. Her mother informed us that she had not urinated in over 3 days, which was most likely due to kidney failure. During times like these a lot of what ifs go through your head-what if Twalib had been in the room when it happened? What if I had scheduled her appointment a week earlier? None of which can change the outcome of the situation however it is simply human nature to think like this. When her mother came into the room she collapsed on the floor calling out her name and crying. My nurses then explained to me that she was crying over the fact that she could not afford to pay for the body to be brought back to the village not because her daughter was dead. With everything that happened on Wednesday this may have been the hardest to stomach. Her mother was not supportive of her condition or care, and clearly viewed the situation as a burden. As easy as it is to judge this woman I have to remind myself that life here is extremely different and challenging. I have no way of knowing what their family life was like at home and what hardships they faced. Death is treated as “voodoo” here and finding someone to transport a dead body is not an easy task. We all chipped in to have the hospital ambulance transport the mother and body back to Paicho, a village about an hour away from Gulu. Two of our nurses ended up accompanying the mother while Twalib and I packed up and headed out the school we were scheduled to visit.
We visited St. Mauritz, one of the school screening sites, to follow up on 10 children we were able to locate. Although I had a hard time focusing on anything, the day had to go on. Twalib knew how hard I was taking Jennifer’s death and tried to distract me by letting me echo these kids. Whenever we have time Twalib lets me echo children in the clinic and teaches me as I go. He knew that letting me do this would take my mind off what happened for a while and well, he was right. We ended up finishing our day around 6pm at which point I was practically ready for bed.
The rest of our week was much more mellow which I was extremely thankful for. We saw a few patients on Thursday, enrolled a few into the registry and called it a relatively early day.
I spent Friday morning with the nurses planning for the next two weeks and then headed home to pack my things. I left Gulu to head to Kampala on the Saturday morning bus and met up with one of my roomates who was down here for work. We met our friend Christine for dinner at the popular Mediterranean restaurant in the city and ended up talking for hours. On Sunday we enjoyed some amazing food at a local café (nothing like this exists in Gulu) and then met a few friends at BAYIMBA, a music festival that took place in Kampala for the last 4 days. They had artists from all over Uganda and multiple craft vendors. It is definitely very different going to a festival where you have never heard of anyone that is featured. We were able to see the ever popular “MC twitch” from Gulu, creator of the song “I’ve Got Swagger”. The lyrics consisted of and I quote “ I’ve got swagger, yea yea, I’ve got swagger, yea” on repeat. It was very interesting to say the least.
I am currently still in Kampala anxiously awaiting my ride to the airport. Tonight I am flying out to meet my mom in Tanzania!! I couldn’t think of a more perfect time for her to be coming and I am so grateful for the opportunity to travel with her. We will be heading to the Serengeti for 3 days before heading to Zanzibar to relax on the beach. It has been over 3 months since I have seen her and I simply cannot wait!
Hope everyone has a great week!