March 3 is observed as World Birth Defects Day and aims at drawing attention to the millions of children who are born with disabilities and life-long medical conditions, and the challenges experienced by their parents in providing care. (Express photo) Despite the annual observation of World Birth Defects Day, care for children with disabilities and support for their parents is not public health or a global health priority, Pune-based Dr Anita Kar, the director of Birth Defects and Childhood Disability Research Centre, told The Indian Express.
The Birth Defects and Childhood Disability Research Centre has published an edited volume, Birth defects in India: Epidemiology and Public Health Implications, to advocate for a public health agenda for children born with birth defects. The book collates statistics to show the urgency of the issue.
There may be 5,00,000 or more babies born each year with birth defects in India. As children survive and grow older, the number of children and adults living with disabilities increases. The book points to statistics suggesting that there may be three million children and adults with intellectual disability, half-million with hearing loss, and five million with vision loss in the country.
In 2019, birth defects accounted for more than 5,30,000 deaths globally, including 117,000 in the South East Asian region, according to the World Health Organization (WHO). “They were the third most common cause of child mortality in the region and the fourth most common cause of neonatal mortality, constituting 12 per cent of all neonatal deaths,” it added.
According to Dr Poonam Khetrapal Singh, WHO regional director for South-East Asia, the theme for the day this year is ‘Many Birth Defects, One Voice’. “Several priorities have to be addressed for the South East Asia region to achieve key targets and goals including a 35 per cent reduction in folic acid preventable neural tube defects, a 50 per cent reduction in thalassemia births and eliminate congenital syphilis,” she said.
In 2019, birth defects accounted for more than 5,30,000 deaths globally, including 117,000 in the South East Asian region. (Express photo) Children are born with intellectual disabilities and with behavioural issues like autism. Many children may be born blind, or unable to hear and speak. Several children are not able to move independently and are wheel-chair bound. Some birth defects can be corrected with surgery, but for many children, medical needs are lifelong and children are dependent on others for daily living activities.
Children with birth defects frequently require multiple therapies, and most have special education and life-skill needs. A child with a disability changes normal family routines, and takes a toll on the physical and emotional health of parents.
The private medical sector has the expertise to provide medical care, physiotherapy, occupational therapy, behavioural therapies for children with special needs. Government services like the Rashtriya Bal Swasthya Karyakram (RBSK) have helped many children with free surgeries. Early intervention centres have been established in several districts. Disability welfare schemes are available.
However, Dr Kar said the book, Birth defects in India, points out that these services are scattered and disorganised, causing enormous challenges to parents.
March 3 is observed as World Birth Defects Day and aims at drawing attention to the millions of children who are born with disabilities and life-long medical conditions, and the challenges experienced by their parents in providing care.
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