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Deprived of oxygen but full of life – how can we support African children affected by neonatal encephalopathy?

Somewhere in a small community clinic in Uganda a baby girl is born. Her mother waits for her first cry…but from Nadia there is no sound...no cry...no breath. Her labour has been long and difficult and Nadia’s brain has been starved of oxygen. Many others like her would be stillborn, but she has a feeble heartbeat. A birth attendant stimulates her and blows air into her lungs. She gasps.
Caption: Living with childhood disability after neonatal encephalopathy. Credit: Karen Martin

Globally, complications around the time of birth leading to ‘birth asphyxia’ is the third leading cause of deaths in children under five years of age, and developmental disability amongst survivors is common. However, they are rarely mentioned in the media or the global health agenda.

Each year an estimated one million babies are affected by intrapartum-related neonatal encephalopathy, abnormal brain function exhibited by a baby who has been deprived of oxygen around the time of birth. Most of these cases occur in low resource settings where access to high-quality obstetric care is often limited. Half of all babies with neonatal encephalopathy are born in sub-Saharan Africa.

In high-income countries like the UK or US, newborns with encephalopathy caused by ‘birth asphyxia’ are cared for in intensive care units and treated by cooling their body temperature for several days after birth. However in the lowest of resource settings, with no access to neonatal intensive care, little is known about what treatments might be safe and effective. What happens to those like Nadia that survive?

Published in the journal EClinicalMedicine are the results of the largest cohort study to describe early childhood outcomes for infants with neonatal encephalopathy in sub-Saharan Africa.

In a cohort of 210 Ugandan children, only 4 out of 10 newborns with encephalopathy survived free from long-term disability. Developmental disabilities like cerebral palsy, global developmental delay, and epilepsy were common in survivors and often associated with loss of hearing and vision.

Supportive care like physiotherapy, mobility aids and feeding support are usually beyond the reach of the majority of affected children throughout the world. Discrimination and exclusion are common for children with disability in Africa, with mothers ostracised from their families and blamed for the child’s disability which is traditionally thought to be caused by a curse or witchcraft.

This work clearly shows that there is an urgent need to improve our understanding of neonatal encephalopathy in Africa. Innovative prevention and intervention strategies are desperately needed if we are to improve outcomes for newborns and improve the quality of life of children and their families.

However, there is light at the end of the tunnel for childhood survivors with a renewed emphasis amongst the global health community on promoting child development through early intervention.  We are now testing an innovative early intervention programme for children affected by developmental disability that aims to support affected families to improve health and well-being of children and their carers.

In the future survivors of neonatal encephalopathy must not only survive, but also thrive.

Publication

Cally J. Tann, Emily L. Webb, Rachel Lassman, Julius Ssekyewa, Margaret Sewegaba, Margaret Musoke, Kathy Burgoine, Cornelia Hagmann, Eleanor Deane-Bowers, Kerstin Norman, Jack Milln, Jennifer J. Kurinczuk, Alison M. Elliott, Miriam Martinez-Biarge, Margaret Nakakeeto, Nicola J. Robertson, Frances M. Cowan. Early Childhood Outcomes After Neonatal Encephalopathy in Uganda: A Cohort Study. EClinicalMedicine.DOI:10.1016/j.eclinm.2018.12.001.