Geoffrey: one boy, perthes disease, 3 heart defects, and acute stigmatization

Geoffrey and his twin brother, Wainaina, are 14 years old. They are the last born children in their family. They have two sisters and a brother. They live in Limuru, a cool and wet agricultural countryside in the highlands of Kenya.

Geoffrey always appeared physically weaker than his twin since birth and his development milestones also took a little longer. His parents were not worried about him, since there was no alarm raised by health care providers during postnatal visits. Additionally, the parents also thought it was normal to have one twin being weaker than the other.

Geoffrey (Right), with his twin brother Wainaina

Once enrolled in school, he was the laid back pupil, who would only play for few minutes before sitting back to watch the others play. His class teacher was concerned and summoned his parents to school severally. He had no discipline issues, didn’t complaint about feeling unwell and his learning was okay but he ‘refused’ to play. He did not play much at home either. This continued until his teacher and parents settled for the assumption that it was his temperament.

One evening after school, Geoffrey came home limping from a mild swelling and severe pain in his right hip joint. This was to be the beginning of his many hospital trips. At an orthopedic hospital, he was diagnosed with perthes disease-a rare childhood condition that occurs when blood supply to the thigh bone is suspended. He was due a corrective surgery when some pre surgery blood tests showed a likely problem with his heart. Further tests confirmed he had pulmonary atresia- the pulmonary valve did not form; therefore, no blood can flow from the right ventricle to the lungs. He also has Ventricular Septal Defect (VSD)- a hole between the two lower chambers of the heart and MAPCAS- arteries that develop to supply blood to the lungs when native pulmonary circulation is underdeveloped.

His parents were well aware that he needed heart surgery but they could not raise the surgery fees. His father runs a small grocery shop from inside their home compound. He suffers from arthritis that makes him immobile most of the time. This leaves his mother as the sole bread winner, relying on meagre earnings as a casual labourer and selling vegetables from their small garden.

Geoffrey’s condition brought about severe stigmatization from the community and that has to a great extent affected their social and emotional wellbeing. Adding salt to the injury, when Geoffrey completed his primary school education last year, he would not get circumcised- missing a culturally significant rite of passage and introducing further stigma for him among his peers.

Amidst so much financial and emotional strain, his mother managed to enroll him and his twin in high school at the beginning of 2020. Geoffrey enjoys singing in the school and church choirs. He loves cooking and dreams of becoming a chef.

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