It’s been six days since our visit. As I’ve closed my eyes each night I can see the precious little children’s faces, their wounds, their vacant stares. I haven’t had any words to write. I haven’t been able to articulate what I think or feel. I’m still not sure. But I want to tell their story. I must.
Walking into the dark female room the smell of mildew filled beds hit me. Mattresses lined the walls to the left and to the right. The small room was crowded, lacking any form of privacy. Family members sat with their children, simply passing the time. As I held the microphone while Sarah filmed, the male staff member spoke directly to me, introducing each patient one by one. I kept looking at the levels on the microphone so I didn’t burst into tears. Each child we were introduced to showed many signs and symptoms of it. Burns on arms, gashes across foreheads, vacant stares, dilated pupils, drooling, curled limbs, seizures, some with the inability to hold themselves up, visible wasting away. This is Nodding Syndrome. It is usually fatal and is a mentally and physically disabling disease that only affects children, typically between the ages of 5 and 15. It causes children to spasm uncontrollably – and eventually they waste away and die. This is a syndrome that generally has gone unheard of in the West, but is becoming somewhat of an epidemic in Northern Uganda even though it’s been around since the late 1950s.
As we continued to meet patients and their families we heard horror story after horror story of children smashing their foreheads (nodding) against the ground repeatedly during seizures, and getting burned due to lack of control of their bodies when cooking. Many drown during a seizure or die of opportunistic infections that strike them when malnourished. Some have simply been abandoned by their families. Many of the children who come into the centres are extremely malnourished, as parents don’t know what to do but starve them. The seizing increases after eating and also when a child is cold. In the children we saw you could see symptoms very similar to other illnesses like Downs Syndrome, Elephantitis, Epilepsy and so on. Ultimately there’s no other way to say it other than they almost looked possessed.
One girl we met had been raped. She had been left vulnerable, as she had no control over her body and was in no mental state to stop her predator. She was only 14 years old when she fell pregnant. She stared at us lifelessly as we met her mother. Her baby was covered in a blanket and for a minute we all thought it mustn’t have been alive. I tried not to let out a gasp, but then the Grandmother peeled back the blanket and pulled it up by the arm, sitting it up to lean against her. The girl is the first in that Medical Centre to have Nodding Syndrome and to have given birth. Apparently it’s becoming a very common occurrence. They have no idea if the Nodding Syndrome has been passed on to the child.
We walked into the male room. The smell of stale urine wafted through the air. There were much fewer patients in this room. We were greeted with the same symptoms. One little boy dragged himself along the ground to his bed because his legs were no longer working. We watched another boy as he was trying to eat his food. As he would scoop up the porridge like substance he would then stop for a number of minutes and then try and lift it to his mouth. Apparently he was having small seizures in between each mouthful. We couldn’t stay much longer as the girls had a flight to catch. I was glad to get outside and get ready to leave.
Our last stop was the discharge tent. There were families and patients who would sit there all day waiting to be discharged. Some of the patients looked a bit better, one Dad claimed his child had been healed. We were so excited about this! Then the staff member told us that often when the patients seem ok and are discharged, they go home and get sick again and the cycle repeats. I couldn’t help but look back at the 50 or so people sitting waiting to be seen by the doctor. Too many children and families to count were waiting outside the office hoping to be seen. They have a very long journey ahead of them.
Emma, Sarah and the team had spoken with one of the National Health staff members the previous day and he had explained that they are unsure of what the cause is. They keep seeing children starting to show signs of it around the age of three and they are struggling to find a cause or a cure. There seem to be a number of myths about where it originated. Was it something in the water? Or in the food? Or does it come from black flies? They think that physical therapy helps some patients and one girl we met had arrived one week earlier unable to sit up and now she is able to. They give some patients medication that they give to those with malaria.
As we started the hour and a half drive back to Pader Town the atmosphere was solemn. You cannot see a place like that and not be affected. I can’t imagine what seeing an HIV Medical Centre would be like. I’ve had no words to type for a few days. It’s the first time I have seen anything like the Nodding Syndrome Medical Centre since being here. I now realize I’m in a very protected position working in an office marketing for CCF. After speaking to friends here and who have visited different parts of Africa they have told me story upon story of the many horrors they have seen similar to this. I’m glad I went to the Centre. I’m privileged to have met those beautiful children. I’m not sure I will actively seek out to go and see something like that again. I felt too helpless. I can’t do anything to help them medically. I can hardly do anything to help them financially. But there is one thing I can do. I can tell their story.
