Compassionate Korail (Pediatric Palliative Care)
Surrounding two attractive areas, Dhaka’s largest Korail slum is proudly spread as a symbolic coexistence of interdependence. A model project of community palliative care, now known as “Mamtamay Korail”, started here as a pilot project under the WHPCA in 2015. A survey of patients entitled to palliative care revealed few children with cerebral palsy, when a dream emerged for providing services to children of “Mamtamay Korail” separately. From here, at the end of 2016, I was invited one day to see if I could take care of the children of the Korail slum. I went there feeling uncomfortable because the possibility of standing beside people empty handed was unknown to me, which is probably a lot for those disadvantaged people.
I was shocked to see a 12-year-old child with cerebral palsy chained to a door. The Mother would leave food with the neighbors and go to work so he would not get lost. This image of reality had only been seen on TV screens or hard from people, never seen with my own eyes. The child would have convulsions while tied up, that stopped on its own after a while. Then maybe someone would feed him a meal, and give him a shower on lucky days. During convulsions, sometimes he would urinate or excrete feces and have to stay in that. The mother was consoled thinking she was looking after her son while alive. She would clean him and take him inside, feed him with her own hands, that was the greatest peace for the mother. “My child’s convulsions are going on indefinitely in my absence and I can’t think of ways to reduce them” – it was unimaginable how helpless a mother could be to go through this experience. The mother of the child took my hand and said, “Doctor Apa, as long as my son is alive can you see if the convulsions can be reduced a little?, then his trouble would lessen a bit”. But she never asked for medicine to stop the convulsions. I sat there stunned for a while, perhaps ashamed to consider myself one of the most successful people in the twentieth century !! Since that day, I have been in an unknown bond with the people of Korail, being given the opportunity to stand beside those children and their families.
It started with 30 children, after many ups and downs we now stand with families of 26 children. Most children have cerebral palsy. Convulsions and stiffness have fully stopped for them, but I have been able to achieve a place of absolute reliance from the parents. They understand that we are with them. I may be unable to give them back a normal, healthy life like yours or mine but I can add some colorful light to their lives, assuring them a place for reliance.