Governments must prioritize and enforce policies to raise awareness, eliminate stigma and enhance facilities to improve quality of life for children with disabilities, writes Semhal Getachew Teka, master’s student at Lund University.
I often think about what a mother with a child who became disabled after resuscitation told me, “I wish you did not try hard to save him, I wish you had let him die rather than him, and I suffer like this.” Her statement opened my eyes to the shortcomings of Ethiopian health care policy and social attitudes towards disability in general.
My neurology clinic attachment was the hardest during my paediatric residency in a teaching hospital in Ethiopia. It wasn’t the busiest of placement, but very emotionally challenging. I felt helpless and frustrated, a feeling I shared with most of my colleagues. During each one-month rotation at the clinic, we evaluated and treated many children with disabilities, some of whom were caused by brain injury due to oxygen deprivation after a cardiac arrest.
When children and neonates experience cardiorespiratory arrest, resuscitation is the responsibility of the medical team – and their only focus is to save the child’s life. In some cases, we must give oxygen and compress their chest for a long period to revive them, and every second the brain is deprived of oxygen is likely to worsen the outcome for the child. Consequently, children who survive a cardiac arrest could experience disabilities because of the underlying disease that caused the arrest but also due to neurologic injuries sustained during the arrest. According to a study, it has been estimated that one-third of the children that survive a cardiac arrest have severe or profound neurological damages.
We save the children today, but will the system provide them with a life tomorrow?
So what happens to a child that experience disability after resuscitation? In Ethiopia, children with physical disabilities face isolation, discrimination, and prejudice. There is little access to support which makes life hard and their future uncertain. Their full potential is often unrealized because they are marginalized in society and unable to access healthcare and education.
Children who cannot walk were carried by parents, most by mothers when brought to the clinics. We as health care providers did the best we could. We gave medications to those who had seizures or other treatable medical conditions, but when it came to their disability, our hands were tied. Their disabilities were further worsened by insufficient access to proper physiotherapy and special needs care. There is a shortage of centres that provide physiotherapy for these children. Due to the misconception about their conditions, adequate follow-up is also not done.
The stress and time constraints involved in caring for children with disabilities cause a massive burden on individuals, families, and societies. Parents usually express that they experienced stigma and a lack of understanding from the community. Often the parents of the children we evaluated at the clinic were single mothers who had an only child with special needs. Some worry they will bare other children with similar conditions, while most are overwhelmed with the 24-hour care they must provide to their disabled child. The situation is incredibly challenging for these mothers as they face multiple difficulties, including poverty, stigma, and a lack of social support.
With many people queuing up at the clinic, we rarely had the luxury of talking to the parents in the crowded setting. Furthermore our training shape us to only focus on the child, while the parents’ challenges are mostly ignored and left unaddressed. At the same time the parents experience psychological, physical, and social challenges associated with caring for a child with a disability. The parents are very much left alone in the fight to care for their child, who needs their constant attention. The health system is also not designed to provide parents/mothers or their child with the support they need for a better quality of life. Their partners and family members usually abandon them, leaving all the burden on them.
While low-income countries have made remarkable progress in reducing child mortality rates, insufficient attention has been given to the well-being of children who survive illnesses and resuscitation but live with disabilities. It is imperative for governments to prioritize raising awareness and eliminating the stigma associated with disabilities. Moreover, they should develop and enforce policies aimed at enhancing facilities that improve the overall quality of life for disabled children. Comprehensive care and rehabilitation services are crucial in elevating their quality of life and facilitating their integration into society. The heartfelt testimony of the mother, who bravely opened up about her child’s disability after resuscitation, serves as a powerful reminder to consider the long-term implications of our actions. Our responsibility goes beyond saving the children today; it extends to ensuring that their parents receive comprehensive social, economic, and psychological support, enabling them to love and embrace their children unconditionally, without resenting their disabilities.
Written by Semhal Getachew Teka, master’s student at Lund University.