Twin baby girls Shakira (left in main photo) and Shahira (right) were born 6 weeks premature on 19th November 2010 in Moni, eastern Indonesia. The parents didn’t know they were expecting twins as antenatal care is very basic in eastern Flores and scans are not routinely available. Sadly, both girls are suffering from hydrocephalus, a condition in which there is excessive accumulation of fluid in the brain. Left untreated, the pressure from this build up of fluid causes severe disability.
Shahira is most affected. Her head is growing rapidly. Their bodies seem quite strong so that gives us hope that (as yet) there are not too many related impairments, but a thorough specialist assessment needs to be undertaken urgently in order to establish the best way forward for treating these girls. Together with some friends in Flores we want to help this family as there is no way that they can meet the costs of treatment without help - all medical costs will have to be paid out of pocket as there is no public health service provision for this type of treatment. Having one child with a disability in Flores is already very difficult, let alone two. Disability is highly stigmatised, with traditional culture and society ostracising families with disabled children.
We have established contact with the neurosurgeon who can examine the girls in a good hospital in Bali (closest specialist centre) the week after Easter. We are also establishing contacts with possible foundations which can help with funding or support while in Bali but so far no luck.
We are urgently looking for donations so we can cover the costs of flights to and from Flores-Bali, accommodation near the hospital, medical check up, scans and likely operation - the most common treatment for hydrocephalus is an artificial shunt surgically inserted to correct the obstruction/malfunctioning fluid circulation and drain the excess brain fluid into other body cavities, from where it can be reabsorbed).
For more info on hydrocephalus see http://www.ninds.nih.gov/disorders/hydrocephalus/detail_hydrocephalus.htm