Reporter Jenny Kleeman reflects on her journey to Uganda and the time she spent there filming Uganda's Miracle Babies.
You can never really prepare yourself for an Unreported World shoot. No matter how many people you speak to from the UK, regardless of how much you've read, the situation on the ground is always a surprise once you land to see it for yourself.
I knew what hydrocephalus was before I left for Uganda. Babies develop it when the flow of fluid inside their brains becomes blocked. The fluid accumulates inside the skull and puts the brain tissues under huge pressure. Untreated, hydrocephalus leads to an enormous swelling of the head, seizures and vision problems, and in most cases, death. I knew that thousands of newborn babies develop hydrocephalus every year in Uganda, and that there was a paediatric neurosurgery hospital in the eastern town of Mbale that took on as many as twenty new cases a day.
But going onto the ward at the CURE hospital for the first time was an overwhelming experience. Nothing had prepared me for the sight of 40 beds full of babies with hydrocephalus.
Nine month-old Kasimiri Ndyamuhaki's head was far larger than that of his 27 year-old mother, Loy Arinaitwe. He couldn't turn or lift it without her help. His bright eyes were fixed downwards - a classic sign of the condition. But he had the face and character of a little baby, with a tiny nose, full lips and plump cheeks, a strong appetite and a healthy dislike of taking baths in cold water. He may have been disfigured by hydrocephalus, but Kasimiri was a beautiful baby.
My director Suemay Oram and I had come to the CURE hospital in search of mothers and babies to follow through hydrocephalus treatment. Loy and Kasimiri didn't stand out, at first. Where some of the mothers on the ward seemed very talkative and outgoing, Loy sat quietly on her bed, cradling her son on her own. But over the days we spent at the hospital, we discovered that Loy wasn't quiet at all: she comes from the far west of Uganda, and she kept to herself because her home is so far away from Mbale that none of the other mothers on the ward spoke her language. Our local producer Emmanuel Gyezaho did, so we got to hear her story.
Loy had discovered Kasimiri's head was swelling after he had an infection at three months old, but it had taken her six months to scrape together the money to pay for their transport to the hospital. Like most Ugandans, Loy is a subsistence farmer, living on the beans, maize and potatoes she grows and selling any surplus. If she gets a good harvest she can expect to earn £20 in six months - and the round trip from her home to Mbale costs £22. She had to watch Kasimiri deteriorate in front of her while she did all she could to get hold of their fare. As his condition worsened, Kasimiri had become a spectacle their village. Loy kept him indoors as much as she could to avoid her neighbours' stares.
Loy's story was heartbreaking, but far from unique. Every year nearly half a million babies worldwide are affected by hydrocephalus, and it's more common than congenital deafness or Down's Syndrome. In Uganda, most cases could have been prevented altogether: 60% of hydrocephalus babies develop the disorder following an infection like meningitis, which they contract after being born at home or spending the first few days of their lives in unhygienic conditions. Kasimiri's hydrocephalus was completely avoidable. But still, he was one of the lucky ones: for every full bed in the CURE ward, there were hundreds of babies outside the hospital who were suffering, untreated.
Kasimiri's condition was so advanced that it was a challenge for the CURE surgeons to treat him. They operated on him twice. It must have been a heartbreaking two weeks for Loy, but she refused to complain, saying only that she was happy to know his life was being saved. The surgery is just the beginning of Kasimiri's treatment. He will need regular check ups and further surgery far away from his home if he's to survive beyond the next few years.
Perhaps what surprised me most in Uganda was the incredible strength and patience of mothers like Loy. Faced with the agonizing wait to save up her transport fare, the traumatic experience of seeing her little baby have brain surgery, and the dilemma of how to pay for the trips to the hospital for his future care, she was calm and pragmatic, quietly holding it together for the sake of her son. And Loy was happy to have us follow her and Kasimiri through such a stressful time in their lives. When the time came for us to say goodbye, she thanked us for keeping her company at the hospital. I felt fortunate to have met such remarkable mothers in Uganda. None of the research I did in the UK could have prepared me for that.
