A birth companion to prevent epilepsy in children
A J Sruthi and her children, 2yr old U S Samsudhir and 14yr old U S Surya, with P S Malathi at their home in Thrissur (Photo by Jyothy Karat)
The three days that her daughter was in the labour ward of the Government General Hospital, Thrissur, Kerala, India, in the summer of 2018 were some of the most stressful days of P S Malathi’s life.
Her 32-year-old daughter A J Sruthi’s pregnancy was beset by clinical depression and anxiety disorders. Her blood pressure would often rise, and Malathi would be summoned into her hospital room to comfort her daughter. At all other times, the 53-year-old had to wait outside, anxiously sneaking a peek every time a staff member pushed open the door.
Both uncontrolled hypertension, and the medicines used to treat hypertension, increase the risk of birth asphyxia and brain injury in babies. The doctor had warned that it was crucial to keep Sruthi’s blood pressure under control. Malathi and her daughter had suffered sleepless nights worrying about the effects Sruthi’s medication might have on the unborn baby. “All I could do was pray,” Malathi says.
Brain injury during childbirth is one of the leading causes of epilepsy in babies in low- and middle-income countries. Approximately 500,000 new cases of epilepsy occur in India every year, of which 87,000 (17.4%) are likely to be related to a brain injury at birth. Research from low- and middle-income countries points to a strong association between conditions during childbirth and brain damage in babies. A particular concern in Indian public sector hospitals is when the hormone oxytocin is administered to pregnant women before they have started labour, which may cause foetal distress and brain injury. Obstructed labour and lack of intrapartum foetal heart rate monitoring are other major risk factors.
Researchers involved in the NIHR-funded Prevention of Epilepsy by reducing Neonatal Encephalopathy (PREVENT) project believe perinatal brain injury could be prevented by introducing a ‘care bundle’ to improve intrapartum care in Indian public hospitals. According to Dr Sudhin Thayyil, chief investigator for the project at Imperial College of London, the new approach would involve intelligent foetal heart rate monitoring using an electronic medical chart to monitor labour, access to brain-oriented neonatal resuscitation, and, importantly, introducing birth companions.
The study, which has received £3.4 million from the NIHR Research and Innovation for Global Health Transformation (RIGHT) programme, aims to involve 80,000 mothers at major public sector hospitals in three different states in India: Bangalore Medical College in Karnataka, Government Medical College, Kozhikode in Kerala and three hospitals in Tamil Nadu.
Like Sruthi, whose annual family income is less than £2,000, most patients who seek care at these medical hospitals come from economically disadvantaged communities. This creates an obvious power imbalance in the hospital environment, where patients and their attendants are afraid to question or take action against authority figures. The first task for the PREVENT team is to train the birth companions, so that they can be active, engaged and empowered participants in the study. But a one-size-fits-all approach won’t work.
In Kerala, the state with the highest literary rate in India (93.91%), the campaign may bank on posters and signage in the hospital, and brochures that families can take back home. Karnataka and Tamil Nadu have a literacy rate of 75.6% and 80.33%, respectively, with the added burden of a large migrant population that doesn’t speak the local language. In these two states, audio-visual mediums with culturally relevant storytelling may work better. One of the main concerns that came up during discussions leading up the study was the resistance that could be expected from the medical staff to the presence of a birth companion in a labour ward.
The medical community raised pertinent points: that staff may feel threatened by the very presence of birth companions, not to mention the lack of space in many labour wards in India. In addition, the concept of midwife-led normal births is non-existent in government hospitals in India. Intra-partum monitoring is often led by junior doctors in obstetrics, with the help of the nursing staff. With a handful of medical staff dealing with over 50 deliveries every day, hourly foetal heart rate monitoring during early labour, as mandated by the World Health Organization, is rarely performed.
Researchers believe that the birth companion could be the agent of change under these conditions, reminding the staff about foetal heart rate monitoring, ensuring patient mobility, nutrition and hydration, and, most importantly, offering emotional support. The PREVENT team aims to train medical staff to collaborate with birth companions in labour wards to create an environment of mutual respect and reduce their own workloads.
One salient point is improving the communication skills of the staff. “My daughter’s doctor understood her condition and instructed the nurses to take special care of her,” says Malathi. “Not everyone is so lucky.” At the government hospital, she witnessed an episode of violence against the medical staff by the relatives of a patient in the neonatal unit. “They were angry because they thought there were no nurses at the neonatal unit. Senior management had to come down to make peace,” she says.
Sruthi delivered a healthy baby boy on 24th of February 2018. It was a normal birth. At the postpartum ward, Malathi stood like a rock next to her daughter and her newborn grandson. Husbands were not allowed in communal labour wards. In any case, Malathi would not have left her daughter’s side. “She is my only daughter. Who can take better care of her than me?” she says.
Read more about the PREVENT study
This blog post was first published on the NIHR website here.
The views and opinions expressed in this blog are those of the authors and do not necessarily reflect those of the NIHR, NHS or the Department of Health and Social Care.
