Latifa (January 2019)
Latifa was one of the first children we saw when we arrived back to the community this year. She was standing near a clump of other children beside the small temple just off the road where they like to gather to play. Her round, chubby toddler face was more defined. Her giant brown saucer-like eyes widened a little when she saw us walk toward her. She was dressed in a school uniform — a checked pinafore dress and white headband to keep her short hair away from her face. The realization that she was attending school was a great surprise for us. School was not something I expected her parents to contemplate for her - she was the second girl and they already struggled to pay school fees for the older three children who are enrolled at an Urdu school with very low fees. We chatted to her briefly, hugged her tightly, and left her to play while we wandered the laneways in search of Indu and the other children we were also excited to see again.
Latifa’s parents, Gulshan and Qadir, came from Bihar, India’s poorest state, to Mumbai for a better life. In 2013, they left behind rural poverty in their native village, for urban poverty in a massive city, buoyed with the hope of steady employment. To get to Mumbai they traveled on a crowded train for thirty hours with their meagre belongings and their three children, Kushnama, Kaif and the baby of the family, Rehan. They followed the trail of other uneducated relatives who’d arrived in Mumbai before them and had managed to find single-room homes in Saki Naka and daily wage employment in factories, as drivers, in tea shops and restaurants, and as domestic help. The couple found menial work and a room in the community and settled in. Latifa, their fourth child was born in 2014. She was a robust baby, round faced, chubby, and adored by her then six year old sister Kushnama, who became her primary caregiver within weeks of her birth so her mother could resume her paid work. By the time Latifa was two, her parents left her in the care of relatives during the day, so Kushnama and her brothers could go to school. She was severely neglected by her young relatives and was often found wandering the laneways, filthy, hungry and wide-eyed. Latifa was passed around the tuition centre as a baby and often ended up in my lap when her siblings attended lessons there, but it wasn’t until she was two and we realized how neglected she was that we took her into our care every day while her siblings attended school and her parents went to work. She spent her days with us and Indu, playing happily with Indu’s daughter Aagya, coming with us on errands, and napping soundly on a mat in the afternoon in the safety of Indu’s home.
We couldn’t keep her safe this year. As described by her mother, a few weeks ago Latifa started to have difficulty swallowing and her muscles became tense. Gulshan and Qadir decided to take her to the mosque to pray for her. When they returned home they were advised by someone to massage her with mustard oil, which they did, and Latifa fell asleep. A day later while sitting cross-legged in her home she fell over while having spasms. It was then that her parents hailed a rickshaw and took her to a nearby private hospital, but was advised by a doctor there, who told them they had no time to waste and no money to pay the fees at the private hospital, to take her to Cooper Hospital, a government (BMC) hospital at least an hour away in an auto-rickshaw in heavy, toxic traffic.
Kushnama holding Latifa, Kaif, and Rehan
Within a day of her admittance to the hospital, her parents called Indu asking for help from us. They required money for medicine as per the hospital policy for patients and/or their relatives to provide medicine as needed from the hospital medical shop. Indu, the two of us, and Indu’s four month-old baby crammed ourselves into a rickshaw and were quickly frustrated by the stalled traffic en route to the hospital. We were told by her mother that Latifa had pneumonia. We were concerned, but had no reason to believe she was in danger. I was frustrated that we didn’t have time to stop and get her a gift of crayons and paper so she would have something to do once she started to feel better.
We found Gulshan and Qadir on the second floor of the hospital. The family was camping, as all families do, on the floor of the large, dingy waiting area, all of them on call to buy medicine as needed per doctor’s orders or waiting for doctors to give them information on their loved one. They were tired. Gulshan told us that Latifa was in intensive care and our hearts sank one by one. After a few hours of waiting, Indu and I were allowed to enter the ICU to see her. We removed our shoes as is hospital policy and entered the room barefoot. The ICU was surprisingly clean (for a government hospital) and the equipment was in good condition. Six other children lay quietly in beds that formed a semi-circle within the confines of the room. Three nurses attended to computer duties behind a small desk along a wall and eyed us with vague interest as we entered the room. Latifa was in the bed farthest from the door. She was hooked up to a heart monitor, a breathing tube was placed in her mouth, medicine dripped from an intravenous line in her hand, and she was completely sedated. We hovered over her bed, wanting to cuddle her, wanting her to hear our voices, but kept our hands to ourselves as the reality of her illness sunk in slowly and painfully. She wouldn’t be needing crayons for awhile.
A few days passed before we visited the hospital again. We kept in contact with the parents via phone calls and news from relatives who live in the community. When we returned to the hospital we found Gulshan sitting on a mat on the floor being comforted by a group of women who were also waiting on news of a child’s prognosis. While Todd wandered the hospital hallways with Indu’s baby, Indu and I sank to the floor to join the women surrounding her. Gulshan was distraught and breathing quickly. The news from the doctor hadn’t been good that day. Latifa’s heart had stopped a few hours before, but they had managed to stabilize her. Her parents hadn’t been allowed to see her. Without much food, with a heavy heart, and nerves about to explode, Gulshan fainted in my arms. There was a momentary rush of hands reaching in to help me hold her up until she came to and dropped back down to the floor, finally falling asleep aided by a woman massaging her head with oil.
Latifa at age three
Government hospitals are not known for their kindness to families. Overrun, overcrowded and dirty, the patients and families are from slum communities who rely on these hospitals because they can’t afford to pay fees in a private hospital. Doctors and nurses are abrupt and families often don’t get information on their patient in a timely manner. Latifa’s parents could see her once a day and only one at a time. The ICU room, while clean by government hospital standards, didn’t require visitors to sanitize their hands or wear a mask or a gown, but we did have to remove our shoes and walk barefoot on a hospital floor.
A few days later, while walking home from the community in the early evening along a busy road full of families shopping for vegetables, mobile phone covers, and kitchen gadgets, my phone rang and my heart sank when I saw the call was from Indu. We stopped walking, people swirled around us, quickly filling in the gap we left on the narrow path. Gulshan had called Indu to ask us to come to the hospital. Latifa’s condition had worsened despite some assurances from doctors that she might get better. She had been intubated the day before to assist her breathing. We gathered with relatives at the hospital and sat silently watching the door to the ICU and holding our breath every time it opened. We left the hospital late that night with some hope because that’s all we had.
A day later at the hospital we noticed Latifa’s doctor walk into the ICU. Indu and I followed him in. After asking questions about who we were, he allowed one of us to accompany him to Latifa’s bedside and I was grateful when Indu motioned for me to go in. I felt my body slump as I approached her bed. I didn’t recognize her. Her beautiful face was heavily swollen masking the features I know so well. The doctor asked me if I knew why Latifa had been admitted. I replied that the parents told us she had pneumonia. “Madam, he said in a tone reserved for speaking to a person of a lower standard, “this child has been admitted because she has tetanus, now complicated by pneumonia. Her situation is very grim.” My body reacted to the distressing news while I informed the doctor that the parents don’t know about the tetanus diagnosis. He didn’t care and concluded our visit by walking me out the door. I walked back to the waiting area and sat beside Indu who sat beside Qadir. I quietly told Indu what the doctor said and shook my head. I knew she wouldn’t be coming home. Her parents were still hopeful because they were never given much information, so much so that Gulshan had gone home for the first time in ten days to bathe and cook food to bring back to her husband. She arrived a short time later, looking fresh and smiling for the first time in days. She had changed into a yellow kurta embroidered with white swirly designs that seemed to signal a renewed faith that her daughter would recover. She sat beside Indu and chatted for a few minutes. We didn’t mention what the doctor had told me. It needed to come from him, we decided and maybe he was wrong. Gulshan deserved a few moments of peace and faith. I have 321 photos of Latifa on my phone, many as recent as a few weeks before she got sick. Indu asked Gulshan if she wanted to see them. She nodded her head and smiled widely. I handed her my phone and she spent the next thirty minutes scrolling through her daughter’s life. Her husband, who Latifa most resembles, looked away. We left the hospital in the late afternoon and waited for news we hoped would never come. At 10:30 pm (March 7th) Indu received a call from Gulshan. Latifa had died a few minutes earlier. She was just five years old.
Latifa and me in January visiting another family in a slum rehabilitation building
There are many ways for a child to be injured or contract illnesses in a slum community, but Latifa or any other child shouldn’t have to die a cruel death from vaccine preventable tetanus. After her death, in an informal poll with some of the mothers about their knowledge of vaccinations, I wasn’t stunned to hear they were complacent, as well as uneducated, about getting their children vaccinated, and/or didn’t understand the need, or realize the inherent dangers of the spread of germs in a filthy, overcrowded community. Vaccinations are free at government hospitals and nearby government clinics, but parents working at low paid daily wage jobs can’t afford to miss work plus the cost of transportation to get to the hospitals to avail themselves of a free service for their children. The long lines at government hospitals ensure that getting a free vaccination will take hours. I gently told them that they could lose wages now or lose wages later while they wait in a hospital if their child becomes sick. Many of them rely on folk medicine when their children get sick, using turmeric, massage and prayer. Education about the need for vaccinations is a huge problem in slum communities. They are generally an itinerant group of people, moving frequently for jobs, cheaper housing and to care for relatives in their native villages. The doctor at Cooper hospital insisted that Gulshan bring her other children in for a tetanus vaccination, which she did, but she has no understanding about why she had to do this.
Within hours of her death, Latifa’s small body was transported back to the community where she lay shrouded in white sheets on the floor of her aunt’s house, a single room near the entrance to the community. We arrived to the community in the morning and walked silently past Qadir and his male relatives dressed in their pressed, clean white tunics and prayer caps. One of the boys we know took me by the hand to the home where Latifa lay and I joined the women in silence, sitting in a space cleared for me next to Latifa’s body. The smoke from incense spiralled about the room. I noticed Kushnama, Latifa’s eleven year old sister, trying in vain to keep her emotions in check as loud weeping is frowned upon at a Muslim funeral. An hour later her body was removed to a cleared spot in the dirty laneway where she was laid on a metal table tented for privacy with flowered sheets borrowed from neighbours. Her body was washed by women in a ritual cleansing of the body as per Islamic customs. Other women and I gathered silently on the sidelines while the men waited a few metres away beside an open metal coffin. When the smell of the final wash of camphor overpowered the regular smells of the slum, her body was gently transferred by the men to the coffin and covered with a green cloth decorated with Islamic scripture. Four men lifted the coffin onto their shoulders and slowly and silently marched their way out of the community followed closely by her relatives and others, in a procession towards the burial site a few kilometres away. I watched from a distance as all women must, until she passed the place near the temple where we had hugged her upon our arrival a few short months ago, while the loud wailing of her mother and her sister pierced the air until the other women pulled them gently into a home.
Noorsaba, Latifa's cousin, holding the photos the children decorated for her family to keep
The children attending Indu’s tuition classes were left adrift with the news of Latifa’s death. She, and her two brothers and sister, attend the classes regularly. The children see more than their share of pain and misery and seem to have hardened attitudes to death, illness, and tragedy. Indu and I decided that I should print out some photos of Latifa for her family. Choosing 69 photos from the over 321 photos I’ve taken since Latifa was a few months old was difficult but cathartic for me. I brought the photos to Indu’s class and asked the children if they would like to help me put them in an album for Latifa’s family. They were asked to pick a few they liked (many of the children also feature in the photos alongside Latifa) and glue the photo to coloured paper and add sparkles, if that’s what they felt like doing. The room erupted. They grabbed photos and then silently got to work on their contribution. Two hours later, they had decorated all 69 photos while reminiscing about their time with Latifa. The family was thankful for the photo album. Gulshan smiled when she saw how much work the children had done to honour her daughter. Now the mourning of sweet Latifa enters the next phase for all of us. Her energy is still with us, in the laneways, in her home, and in the faces of her siblings.
Medicine for Latifa while at Cooper Hospital: 6000 rupees ($120)
Photos (69) of Latifa for her family: 621 rupees ($12)
Album: 160 rupees ($3.10)