Elie Nsanzimana suffers from a birth defect known as microcephaly, this condition is evident in his structure, from the head being a lot smaller than the body. This rare occurrence is a result of lack of head growth during pregnancy directly correlating to the brain’s inability to fully develop. Residing in the southern province, Nsanzimana has been given scornful names like “monkey boy” or “jungle boy” because of his appearance. Most of the kids choose to play around him, mostly to make fun of him. He sometimes eats grass, and so the community sees him as one with ‘animal traits’, which unfortunately makes him the subject of bullying in the community by children and adults. Dr Emmanuel Rudakemwa, a specialist in microcephaly, says micro means small whereas cephaly means head. “If it’s clinical microcephaly, it is essentially associated with a small brain, and, therefore, associated with intellectual disability. So definitely more often than not you’ll find they have some issues of intelligence,” he says. Unfortunately there is no cure to microcephaly. Treatment involves supportive care and close monitoring, which Nsanzimana’s mother understands and has to chase after him when he runs off sometimes. However, it helps that Nsanzimana has a school he attends for special needs children. Causes According to Mayo Clinic, microcephaly usually is the result of a problem with brain development, which can occur in the womb (congenital) or during infancy. Microcephaly may be genetic. Other causes, as Mayo Clinic lists, may include: • Craniosynostosis. Early fusing of the joints (sutures) between the bony plates that form an infant’s skull keeps the brain from growing. Treating craniosynostosis usually means an infant needs surgery to separate the fused bones. This surgery relieves pressure on the brain, giving it enough space to grow and develop. •Genetic changes. Down syndrome and other conditions may result in microcephaly. • Decreased oxygen to the fetal brain (cerebral anoxia). Certain complications of pregnancy or delivery can impair oxygen delivery to a baby’s brain. • Infections passed to the fetus during pregnancy. These include toxoplasmosis, cytomegalovirus, German measles (rubella), chickenpox (varicella) and Zika virus. • Exposure to drugs, alcohol or certain toxic chemicals in the womb. Any of these may affect fetal brain development during pregnancy. • Severe malnutrition. Not getting enough nutrients during pregnancy may hurt fetal brain development. • Uncontrolled phenylketonuria, also known as PKU, in the mother. PKU hampers the mother’s ability to break down the amino acid phenylalanine and may affect brain development of the fetus during pregnancy. Effects “The brain and the body are presented in a particular way to the point that if the speech area is the one affected, one might have speech related issues. Because as you know the brain is the control system for the entire body. Depending on which part of the brain is affected, the impact is expressed,” Dr Rudakemwa says. Nsanzimana is the only child of his parents, five pregnancies were unfortunately miscarried. His mother prayed to conceive a child and see the pregnancy through because she kept suffering miscarriages. She told herself that even if the child was born disabled, she would be grateful and just wanted the child to live. When her son was born, she says he was a gift from heaven. “When a woman is pregnant and exposed to toxic chemicals, mercury poisoning, a lack of vitamins or other nutrients, it can cause the brain formation to become impaired. They may have infections in the uterus with a common virus we know as the cytomegalovirus, or toxoplasma. So there are people who take medications either prescribed, or not, which may have a long-term impact on different parts of the baby’s body that are growing,” Dr Rudakemwa says. He also adds that drinking alcohol during birth and stroke occurrences from the mother are also a cause of microcephaly. Neighbours don’t consider Nsanzimana to be human, they call him ‘ape’, ‘monkey’, or ‘gorilla’ and this of course frustrates and hurts the mother. She says that some neighbours who are adults beat him when he gets close yet he is harmless, adding that they don’t see him as a human being, rather, some sort of wild animal. The young boy tries to evade people and runs away from kids around him because of the bullying. His disability also has an effect on his speech. He wasn’t given proper treatment at birth which resulted in an inability to socialise and communicate well. “Definitely, there could be issues of stigma in the environment in which the child is being raised. People start calling these children names, and these names can only create and perpetuate an inferiority complex in these kids,” Dr Rudakemwa says. Even though he was detested by his village, media coverage from Afrimax on YouTube got him attention and people donated funds for shelter, clothing, and education. Today, Nsanzimana is in a much better place, attending a special needs school that has kids with similar conditions, as well as having a better place of residence with this mother.
