Lives deprived of hope

Twelve-year-old Rubaiya's world is limited to her bed. A resident of the Korail slum in the capital, she lives in a dark windowless tin-shed shanty. She has not seen a glimpse of the sky in the last three years. The last time she went on a trip outside was seven years ago, at her grandmother's home in Cumilla.

Rubaiya suffers from cerebral palsy (CP), a form of disability that affects the development of a person's brain, which affects mobility.

"All of our family members can go out and have a day out on weekends, but Rubaiya and I can't. Her life is confined to the small dark room," said her mother Lucky Begum, who works as a house help.

Rubaiya is among the 24 children in Korail slum suffering from this disability without medical care, because their families cannot afford it.

According to Institute of Paediatric Neurodisorder and Autism at Bangabandhu Sheikh Mujib Medical University (BSMMU), a myriad of factors could cause CP, such as infections during pregnancy, injuries during birth, premature birth, infant infections or accidents that cause traumatic head injuries. Most instances of CP can be identified by the age of two. Sometimes, it can be identified within a few months after birth.

Prolonged bed rest, need for round-the-clock care and mobility impairments reduce the quality of life of primary caregivers. And the level of physical, emotional, social and financial burden and stress among them is much higher than those caring for a child with regular needs.

— Noorjahan Begum Specialist, Paediatric Intensive Care Unit at Evercare Hospital Dhaka

Rubaiya was diagnosed with CP when she was two months old, after a sudden epilepsy that damaged her brain.

Although the brain damage is incurable, her quality of life could have been improved if she had received the required medical care and therapy at the time. But Rubaiya's parents, who struggle to eke out a living, were unaware of the condition. Like most other parents facing the same predicament, poverty and illiteracy forced them to discontinue the treatment.

With the birth of their second child, Rubaiya's mother could not continue with Rubaiya's regular exercise for a long time. As a result, her condition worsened and she became completely bedridden.

Last year, she hit puberty, and her mother solely takes care of her menstrual hygiene. Her father has arranged space for her shower inside the only room where they all share a living, as it is difficult to carry a fully-grown teenager to the common bathroom, where other people in their neighbourhood take showers.

For 10-year-old Fatema, who also suffers from CP, taking a shower is more of a harrowing ordeal. She lives in a wooden shanty, on the second floor. So her mother has to carry her downstairs every time, using the ramshackle staircase with loose railings and spindles.

Fatema's parents cannot afford sanitary pads for regular use. She has to manage with damp rags, dried using only the ceiling fan. This exacerbates her health condition as she chronically suffers from a cold and cough.

Like most other mothers in the slum, Fatema's mother did not go for antenatal check-ups during her pregnancy, and gave birth at home, with the help of an untrained midwife.

When born, Fatema did not cry. And when she was just one month old, she was diagnosed with CP, along with pneumonia.

According to BSMMU's Paediatric Neurology Chairman Prof Gopen Kumar Kundu, there are a couple of symptoms which pose a high risk for CP, such as, if infants don't cry within the first minute since birth, don't interact with their mother by the second month, their motor skills don't develop on time, or if they suffer from a seizure.

"If children with such developmental delays could be brought to us within three years of age, their life can be improved with medicine and regular therapies. In most cases, they can maintain a balanced life and attend school," he said.

"Mothers must be counselled not to get hopeless in such cases. Otherwise, they will consider the children as a burden, even though early management can go a long way," he added.

A yet-to-be-published research -- conducted mostly on the caregivers of children with CP in Korail -- showed that in more than 97 percent of the cases, the caregivers are females. Around 88.6 percent of them are usually mothers, while 8.6 percent are grandmothers. Around 80 percent of those surveyed said other family members rarely extend a helping hand in care-giving.

"Prolonged bed rest, need for round-the-clock care and mobility impairments reduce the quality of life of primary caregivers. And the level of physical, emotional, social and financial burden and stress among them is much higher than those caring for a child with regular needs," said lead researcher Noorjahan Begum, who is also a paediatric intensive care unit specialist in Evercare Hospital Dhaka.

"This stress often creates conflict between the caregiver and the sick child, reduces the quality of care and causes relationship troubles," she added.

For example, in 12-year-old Arifa's case, her parents got divorced in the aftermath of the diagnosis of her CP. She was initially at her father's place, where she was fed sedatives all the time, to be kept asleep with little to no food. The continuous strain of being forcefully bed-bound caused bedsores and infected her head.

Now she lives with her maternal grandmother in the slum. "She has been living with me since she was three years old. Her parents have already remarried and are busy with their lives," said the grandmother.

"I don't know who will take care of her after my death. Sometimes, I beat her for wetting the bed. But later on, I feel guilty."

Dr Nezamuddin Ahmad, former chairperson of the department of palliative medicine at BSMMU, and the adviser of the Palliative Care Society of Bangladesh -- which works on improving the life of 25 children with CP in Korail -- recommended a proper rehabilitation system for them.

"Unlike conventional schooling, these children can be given need-based schooling, along with proper medication, required therapy and nutritious meals," he said.

Contrary to common conceptions, Dr Ahmad remarked that this treatment does not require a huge amount of money.

He also highlighted that expecting mothers of low-income settlements must be provided with proper antenatal care, to ensure safe delivery, as the failure of which is considered to be the major cause of CP.