Table 4 A story of one cohort child admitted in icddr,b Dhaka hospital in Bangladesh aged 6 months with SWK (Household – HH53)

Ali (pseudonym) is seven months old. He lived in a rural area with his father and 20 year old mother until his parents divorced when he was 45 days old. The mother, who has primary level education, moved with Ali back to her own parents’ home in a Dhaka slum, to live with her parents, brother and sister. So people were living in one rented room. The room has a tin roof and walls, which amplifies the high temperatures in summer. Ali’s father refused to keep Ali in the rural home and so Ali’s mum claimed financial support from the child’s father for his costs (food, clothes and treatment, in line with national law). Ali’s father refused to pay. His uncle and aunt were the main income earners in the Dhaka house, but their income from working in garment factories was barely enough to meet the basic daily HH needs of their own parents. So, the additional cost for Ali and his mother became a burden for them. In addition, Ali’s mother needed to pay her layer to fight her case against the child’s father. Although she started to work as a maid to try to earn some money, her own mother (Ali’s grandmother) couldn’t care for Ali and manage all the other household chores. No other relatives lived in the area and the family was never visited by a community health worker (CHW).

Regarding Ali’s health and development since birth - the grandmother said that “the child was not getting enough breast milk by 2 month of age and so was crying after feeding”. She contacted a nearby drug seller she often used because he was friendly and did not ask for tests before giving medicine. He advised the child is given formula to supplement the breastfeeding. They began this. Over the next few months, Ali suffered from diarrhoea several times, lost weight, got ‘bony’ and at 4 months developed measles. To get low cost traditional treatment Ali was taken back to the rural area to stay with his mother while she visited her rural house. There he was recovering and so was returned to Dhaka, but was still weak and so the maternal grandmother gave him vitamin syrup. He soon developed watery diarrhoea. Ali’s mother was worried that her mother was unable to care for her child and so gave up her job as a maid. She was very concerned that if anything bad happened to Ali his father would blame her and submit an objection to the police or court. The drug seller suggested oral rehydration saline (ORS), but even after administering it the child’s condition continued to deteriorate and he started to vomit. So the drug seller referred the child to a hospital, but Ali’s mother did not have the money to go to that hospital and was afraid to travel there alone. A neighbour advised her to go to icddr,b Dhaka for free treatment. Ali’s uncle assisted her with transport costs and accompanied her and the grandmother to icddr,b, where Ali was admitted.

In addition to diarrhoea and vomiting, Ali was diagnosed with SWK. He stayed in hospital for 19 days with either his mother or grandmother always there with him. They were assisted by Ali’s uncle with food. A major concern for the mother during the admission was the child’s father phoning to say, “if anything happens to my son, I will sue you”. She took special care of her child in the hospital for early recovery. Hospital staff noticed that when the grandmother was there without the mother, she would sleep a lot, as she herself was unwell. The grandmother was worried about the other household members who needed her to cook for them. In the end the household pressures were so great that Ali’s mother and grandmother discharged him against medical advice. They did receive counselling from hospital health workers before discharge on recommended food, medicine, water, hygiene and sanitation practices, and illness prevention strategies.

After discharge, despite nutrition counselling, the grandmother felt that breast milk and formula were adequate; and that the child did not need complimentary food. The grandmother also admitted feeling so overwhelmed sometimes that she wished the child would be sent to his father so her daughter could remarry. Although the mother and grandmother worked to follow the hygiene practices and use half boil water advised by health workers, we observed this was difficult to maintain, and within a week of discharge the child was suffering again from cough and fever, and on day 14 developed diarrhoea. Ali’s grandmother attributed this to the mother’s constant colds being transmitted through her breast milk to the child and his constantly wet clothes from urination. She bought medicine from a drug seller which reduced the child’s fever but not his cough. Relatives and neighbours advised against them returning to icddrb in case he died but the mother had faith in them so went following some advice with a cohort study clinician over the phone. He was re-admitted directly into ICU and treated for diarrhoea and pneumonia. He was discharged from hospital 12 days later after he showed signs of recovery.

Post-discharge the mother prepared food at home as per hospital instruction for 3 months. She could afford this because the father had been given a court order to provide. But on the 3rd visit of the social science team the child appeared sick and thin - his aunt had suddenly lost her job and the mother was suspected by the grandmother to be spending some of the child’s money from the father on herself. His cold at the time was considered by her ‘not to a big problem as he’d had it since birth so would recover’. Unfortunately, the child died 180 days after his first discharge from icddr,b hospital.