Boys! Who doesn’t love them? They are daring, adventurous creations who bring life to most homes. Their absence is so strongly felt when they are away from home. Yet they are almost a nuisance especially as toddlers and adolescents. Madam AP has five of them at all the interesting periods of development. She was almost mobbed by them when I first met them in the corridors of my hospital ward. The eldest was 13 year old Master PS with whom I had an interesting conversation. This conversation laid bare the obvious lack of any form of social welfare and social protection for our children as a nation, and the dangerous deficiencies in our healthcare delivery system.
All the five boys of madam AP have a disease condition called HAEMOPHILIA which is an abnormality of the clotting system of blood. Sufferers lack a protein in blood called factor 8. The condition is an inherited disorder which almost exclusively occurs in males who inherit the abnormal gene from their mothers who are carriers of the disorder.
The function of factor 8 is to cause blood to clot so that one does not bleed out. So, without this protein sufferers tend to bleed into their joints and muscles even without provocation; and bleed out excessively following certain procedures like circumcision and traumatic cuts and bruising.
I decided to have a conversation with Master PS. I was interested in his social circumstances because he was severely deformed by the effects of his affliction. He had bled repeatedly into both of his knee joints from infancy and now his legs are physically deformed: he cannot stand straight. His legs are permanently bent at the knee joints making rising from a sitting position and walking extremely difficult!
At 13 years, Master PS was in class 4! “No, you should have been in JHS by now. Why are you in class 4?” I inquired. He replied: “I did not start school early. My mother tells me I had been experiencing recurrent swelling of my joints. I am always sick”. His schooling has been delayed and he can no longer take active part in his favourite football game. He tells me he used to keep the goal in football games and he was very good. But due to his condition he can no longer do that.
Out of the five kids, PS is the only one in school. The others are 10, 6, 4 and 2 years respectively. At least I expected the second and third to have started school but that was not the case. The whole family is staying in a family house of his maternal grandmother who is the main breadwinner. She is a revenue collector at the public toilet in their locality. She usually pays his school fees. On a usual day PS gets GH₵1.00 for school: 20p as extra classes’ fees and 80p for breakfast.
Obviously surprised, I asked: ” So what food can you buy with 80p?” Master PS: “Usually waakye. Yes. I buy just waakye, no fish nor egg and it’s alright”. He actually giggled when I mentioned lunch. It sounded strange to him. If he is able to go to the farm and is lucky to find some cassava to bring home in time, then he could enjoy some “bankye ampesie” for lunch. Otherwise the usual for all of them is no lunch.
- So I had heard enough. Can nature be so cruel as to gift this poor woman with 5 boys all of whom are living with Hemophilia? Each of the boys had a complication of Hemophilia which had rendered him physically disabled: each of them had one or more disfigured elbow, ankle and/or knee joints effectively reducing their quality of life and productivity.
I think nature gives us the opportunity as humans to display our humanity. And Hemophilia is one such opportunity.
At best there are possibly only 2,500 of Ghanaians with this blood disorder for our population of roughly 25million. As a country it means we can easily relieve their distress or even much more easily decide to forget about them. And I think my country has decided to do the latter. After all there are possibly only 2,500 of them. Their loss will not be described as a disaster but to their parents their loss will be a calamity.
Hemophilia is not curable. Boys are periodically given what they lack – factor 8 – to prevent bleeds and improve quality of life. My dear country Ghana however, does not procure this vital essential drug for these boys. Not even in our esteemed Teaching Hospitals. Let me not attempt therefore, to ask of any existing specific policy for persons with haemophilia and of ways of rehabilitating those severely affected by the disorder.
The Ghanaian child with Hemophilia is forgotten and non- existent in our healthcare policies. They are a result of our non-existent social welfare for children generally, I dare say. Can you tell me otherwise?
Dr Lawrence Osei-Tutu
Specialist Paediatrician (General)
Department of Child Health, Komfo Anokye Teaching Hospital, Kumasi.