Today my heart broke

A six year old boy presented with the classic symptoms of Duchenne Muscular Dystrophy. This is a rapidly progressive neuromuscular condition with a life expectancy of 13 years (in developed countries). His signs included a positive Gowers sign, a trendelenberg gait, frequent falls and an inability to hop or run. 

I turned to my Physical Manual for Neurological Conditions text to read “informing patients that their child has DMD causes extreme distress and should only be undertaken by the most senior member of the team, in an appropriate environment, with a support worker present who can maintain contact with the family”.

I felt so ill-equipped without the back-up of a whole multidisciplinary team. This really hit home the lack of basic services available to the Haitian population. The Neurology service is particularly limited.

The mother has approached various doctors but has no appreciation or understanding of the disorder. 

It is likely that she has been attending voodoo priests and the common belief would be that a spell has been cast on the child.

Perhaps she has seen a western style Doctor and has an acceptance issue, or a lack of understanding due to a cultural or language barrier, I am unsure. It worries me that empathy is lost in translation. I shed a tear of frustration on my way home from work. How do you give hope to someone, third party, when there really is very little hope to give? I can't imagine the desperation and pain of the family.

I went home to my mango tree with very intense feelings of loneliness and isolation, faced with a whole weekend of nothing to do and nobody to do it with. However, to my rescue came the adorable Jessica. She is a teenage daughter of the family I am staying with. She entertained me all evening with her bubbly personality and chatter. She even taught me how to count to 100 in Creole!

My light of life - the Mango Tree!