The Story of Benina: A Trip to a Ugandan Neurosurgeon
By Nangoli Andrew
Obtaining specialized healthcare in a low resource setting takes work and perseverance. Dedicated healthcare professionals will go to impressive lengths to seek out the best care that is offered in areas lacking health infrastructure. Take a moment to read about the journey taken to ensure 7-month old Benina would be seen by a neurosurgeon. This story is told by Andrew, a clinical officers that BTH works with in Kabale, Uganda.
I met Benina on 18th July 2018, during a BTH/KIHEFO community outreach in Mparo. The outreach clinic was during BTH's point of care ultrasound (POCUS) training program, and I was practicing scanning breast masses for cancer and pediatric lungs for pneumonia with the other trainees. Clinic was running as usual with medical and dental services being offered to the community. We saw many people but there came Ayebare Benina, a 7month old child who was brought by the mother with complaints of failure to thrive well , delayed growth and facial rigidity. Our team of local health providers led by Dr Geoffrey Anguyo saw the child and did the necessary assessment. The case was quite interesting; it was discussed with the whole team of Drs from abroad, led by Dr Bill Cherniak, who were teaching the POCUS training program.
After an assessment, a number of investigations were suggested, but we were in a remote community which is far away from town, and none of the investigations could be done nearby. Arrangements were made to have the child and the mother transported to the KIHEFO clinic in Kabale, the nearest town. There, some of the investigations could be done, including a CT scan of the head. All these costs were covered by BTH.
From the CT scan results a lot of abnormality was revealed (much of the brain was replaced by water). The visiting POCUS program trainers tried to make consultations from friends abroad and one neurosurgeon in south Africa linked us to a neurosurgeon who works in cure hospital in Mbale (Eastern Uganda). One of our trainers, Dr. Michelle Lee, did all this connections and I was looped in to have the child transported to Mbale on 26th July 2018.
Before we planned our trip to Mbale a lot of counselling was done by both KIHEFO social workers and the physicians who came with BTH since the mother had not moved more 15km away from home and also never used a bus. This mother did not have a phone and it would be hard for us to give feedback to her family at home about our trip to Mbale. We arranged for her to go home to her village to let them know the plan for the child to be seen by the neurosurgeon in Mbale, and also to try to get contact phone numbers from relatives or neighbors so that we can keep updating them about our trip.
It was on 25th July 2018 when I booked the night bus to start our trip of about 650km. It was at around 11:oopm when we started out 450km journey to the capital, Kampala. We slept on the bus and found ourselves in Kamapala at around 6:35am. Benina's mother asked me many questions about where we had reached. The big city and the traffic were so new to her. She asked me whether we reached America because of many flats in the city. This prompted me to show her around as we were heading to a hotel to have breakfast before we would board the Mbale bus.
At 8:00am we embarked on next bus ride, which was about 190km-200km from Kampala. Benina's mother asked the passanger she was seated next to, in her local language, where we had reached. The gentleman replied in his own local language. Benina's mom asked me, "is this man speaking Spanish?" I replied to her what the gentleman had said since I knew both local languages being spoken. She kept on wondering about the many cars on the road as we were moving out of Mukono town.
As we approached River Nile there was a lot laughter about how mum Benina perceived the bridge. She stood up and shouted to everyone in the bus, "why are you taking me to the lake?" She had never seen such a road which passes on the water. I explained to her that we could not avoid the lake since the region we were heading to was across the River Nile.
As we reached Iganga town, we had a stop over for all people to go to wash rooms. I came back and found Benina's mom had carried all her belongings from the bus. When I asked her what she was doing, she said, "I thought we had reached Mbale town since everyone came out." It took about 25minutes to convince her to enter the bus again. She requested to sit in front so that she could see where she was going since everything was strange to her, and her requested was granted since I had explained to everyone in the bus about Benina.
As we entered mbale she asked me whether we had reached the so-called India because of the long travel on the bus. We immediately got a boda (public transportation) to take us to Cure Hospital. We moved very fast to be cleared since our appointment was communicated to everyone at the hospital by the surgeon, and so we were able to refresh and have lunch since our appointment was at about 5:00pm.
As we were waiting for the surgeon, Benina's mother said, "Do you know what? I thought my child was badly off, but my child is well off compared to those I have seen here." This is because the hospital serves patients from all over East Africa with neurological conditions. The surgeon saw us and also did a detailed assessment of the child and came up with a treatment plan which he discussed with us:
1. Benina was to be started on physiotherapy treatment at a hospital near her home 2. Benina was to be reviewed by a surgeon in Mbarara, which is much closer to her home. This surgeon holds his clinic every six weeks. He will try to figure out when the Benina will be ready for surgery.
After all this Benina's mother was taken to the matron, who was in charge of hostels for patients and care takers, and was allocated a number and given a hostel uniform. This was another unique thing to her because she had not been in such a health facility with such organized arrangements.
Watch out for our next post of our trip from Mbale back home, and for updates on how Benina is progressing on physiotherapy!