Justine Nambatya was born with a cleft lip, palate hands and toes. One of her eyes often swells and releases pus. Justine has not since breastfed from birth because her cleft lip could not allow her to latch on to her mother’s breast. With the mother now absent, her father has to figure it out on his own. He is a hawker and walks hours vending bags in and around the city. But it’s a hustle, he hardly makes enough money to cater for his needs.“I can’t eat if she has not eaten. I know you take care of the child first.” Said, LulePafula – Justine’s Father. Her mother abandoned home when Justine was about two months old, Lule was not sure why his wife left since he had not known her to be problematic but he suspected it had to do with how his family shabbily treated her. She was with him when they first contacted CORSU a rehabilitation hospital for people with disabilities. But he will go to it alone on the 24th August when Justine undergoes through the first surgery to correct the cleft lip and palate.
“Cleft is an English word to just mean a separation in what was otherwise be joined together. The first part of the surgery is to help close the gap and in closing the gap we are making them look like children they may afford to smile and that also helps the mother know that they are going back to a child that looks normal.” The healing process after surgery is fairly simple but most critically the guardian has to always keep the wound clean. “The most worry is when they feed all sorts of feeds that will again cause separation of this tough area. So we really emphasize soft feeds that may range from breast milk for those that are really young.” CORSU offered this surgery free of charge butLule was worried of the period he would be too busy taking care of his daughter if he had to make a living. Friends and others with similar experience advised Lule to buy for Justine special shoes but he said he couldn’t afford them. CORSU advised against surgery for the hands and feet. “The worst thing to do to them is to do any form of surgery that makes them look better but not work better. Now we can do something for the hand and try to make look like a hand just to close the gap and hope that all that will be good. But these children learn to compensate, they learn to make with the deficit they have and so as they grow, they do not know that they have a particular problem; they will learn to hold particular objects, write and we usually don’t address that. Instead, we help them through physiotherapy to make what they have.” Said, Cornelius Masambu – Plastic Surgery Resident, CORSU.
Dr. Masambu explained that cleanliness was the surest way to stop eye infection but Lule who walks for miles on dusty and sometimes clear roads to sell his merchandise. On the day we visited, Justine had a fever so she was irritable not as happy and playful the day we first met Lule. Each time Justine falls sick, the father takes her to a clinic in KamutuzaMasaka where she has been treated since she was a new born. “They brought together many children with disabilities. When we saw them, we got some hope. It made me stronger, so even when Justine’s mother left, I did not fear.” Said, LulePafula.
“If this is the first time you are receiving a child a cleft; definitely you get depressed, you will wonder because the child just doesn’t look normal. So one of the things we do is to make sure that the mother or the father or both parents for that matter are aware that this condition exists and that it’s treatable.” Said, Dr. Masambu. “She said, guard your child like glass because there many who want to abuse them.” Said, LulePafula.
Dr. Masambu said that there was no known cause of cleft lip and palate hands and feet but he added that there were some environmental factors and associated drugs that had been found to be unsafe for pregnant women, smoking during pregnancy and some genetic factors as well. “No, we can’t. Unfortunately, out there in the community they may think that it’s a curse or something like but like I said earlier on; it has no particular cause, it can occur to anybody, it can occur in certain families because of the genetics but most of the patients they just want to call it sporadic cases; it occurs in just one individual and that’s all they know for the rest of the other children they have.”
Children with disabilities are one of the most marginalized groups in society. According to UNICEF, about 2.5 million children live with disabilities in Uganda. Only 9% of these school going attend primary school and just 6% go on to secondary school. Uganda ratified the convention on the rights of persons with disability in 2008 but there is a serious gap in the implementation of the regulatory framework, mainly due to lack of coordination between the government institutions, and civil society organizations working to improve the lives of people with disabilities. So what does Justine’s future look like in the circumstances? “We are trying to push the Parliament to come up with good policies where these children are brought on board. You are aware that in education, there’s an issue of special need well as again the government doesn’t put emphasis on those teachers who are handling special needs in order to deliver education to these children. Because for me I believe that when we are educated, even the disability can be forgotten.” Said, Hellen Asamo – MP, People with Disabilities. A Member of Parliament for People with Disabilities Hellen Asamo said the parents of these children needed to find organizations that dealt with disabled children and seek help. CORSU for example carries out these operations for free and in 2016 it handled 200 children with similar cases.
