Devna- A budding dancer
As Devna Johar gracefully moves to the rhythm of her favorite tune, her eyes sparkle with joy. At 7 years old, she's already found a passion for dance that lights up her world.
Born in a village in Yamunanagar, Haryana, India, Devna's journey began with a unique challenge – lumbar spina bifida, a rare birth defect characterized by incomplete closing of the backbone and membranes around the spinal cord, a condition that has severely limited her mobility and presented other health challenges. Despite these hurdles, she dreams of becoming a teacher, inspired by her father, Sudesh Kumar, who works as a storekeeper in a nearby private school.
(Devna Johar at her home in Yamunanagar, India. (Photo credit: Foundation for Survival of Women and Children.)
“We only discovered Devna's condition during her birth. It was unexpected. She underwent surgery to close an opening along her spine, but despite this, she still needs support to walk and lacks control over her bowel and bladder movements,” said Sudesh Kumar, Devna’s father. He adds, “Doctors have asked us to continue with physiotherapy and exercises at home to support her development. While I am concerned about her future, our focus remains on her happiness and wellbeing.”
Devna is not alone. Globally, an estimated 8 million children are born with birth defects every year. These conditions contribute significantly to child mortality, particularly in the WHO South-East Asia Region, where nearly 300 children under five die from congenital defects every day. In the Region, the proportion of child deaths linked to birth defects has risen from 4% to 11%, compared to a global increase from 4.6% to 8%.
“Each child entering the world deserves the chance to be free from birth defects and lead a long, healthy, and fulfilling life. We must do all we can to prevent birth defects and detect and manage congenital defects. By ensuring timely screening, diagnosis, and care, we can significantly improve outcomes and quality of life, for people born with these conditions and their caregivers,” said Ms. Saima Wazed, Regional Director, WHO South-East Asia.
Birth defects are abnormalities in how a baby develops during pregnancy, the most common being problems with the heart, brain, or spinal cord, and conditions like Down syndrome. Birth defects can cause stillbirths, early deaths, chronic illness, and disability, and pose significant challenges for individuals, their families, and communities.
While genetics, infections, nutrition, or environmental factors may contribute to the occurrence of birth defects, it is often difficult to identify exact causes. Some congenital disorders can be prevented by vaccination especially against rubella ensuring sufficient intake of folic acid or iodine through fortified staple foods or supplements and providing adequate care before and during pregnancy. Early diagnosis and timely treatment can also alleviate or reduce the impact of birth defects.
Aditya - A music lover
“We were unaware of the pregnancy until the third and fourth months, which prevented us from undergoing certain tests,” recalls Summit Kumar, a parent from Yamunanagar, Haryana, India. “I’ll always remember those fifteen minutes when the doctors informed us about the birth of our son Aditya, followed by the news of his congenital anomalies and the slim likelihood of survival,” he reflects.
Aditya was born in 2017 with mandibulofacial dysostosis, a rare disorder that affects the development of the bones in the face and jaw, a cleft lip, and a condition that led to the shortening of one leg.
(Aditya at his home in Yamunanagar, India. Photo credit: Foundation for Survival of Women and Children.)
Supported by his family, caregivers, and friends, Aditya, affectionately known as 'Adi', persevered through surgeries, hearing, and speech therapy, and is now eagerly anticipating his seventh birthday in May. While he excels in academics, yet simple tasks like climbing stairs or carrying his school bag require assistance, but that has not diminished his zest for life, especially music and dancing.
Aditya and Devna, along with many other children, benefit from the essential assistance provided by the non-profit organization, ‘Foundation for Survival of Women and Children,’ dedicated to supporting the health of women and children. This support comes at a crucial time when efforts to address birth defects have gained momentum. Since 2014, WHO-supported initiatives have aimed to reduce maternal, newborn, and child mortality rates by focusing on preventing, detecting, and managing birth defects in the Region. This comprehensive approach has been embraced across the Region, with all eleven countries now equipped with national plans for birth defect prevention and control.
“Since its development in 2014, the SEAR-NBBD (South-East Asia Region New-Born Birth Defects) database has been instrumental in capturing the stories of over 4.6 million births, among them 50,000 infants born with birth defects across six countries. Through this initiative, we've not only tracked progress but also gained deeper insights into the lives affected by these challenges, fostering a deeper understanding of the issue,” said Dr Neena Raina, Director, Family Health Gender and Life Course (FGL), WHO South-East Asia.
Significant strides have been made in accelerating routine rubella vaccination, leading to the successful elimination of rubella in five countries (Bhutan, DPR Korea, Maldives, Sri Lanka, and Timor-Leste). Several countries now fortify wheat flour with folic acid, vitamin B-12, and iron. Pre-conception folic acid supplements are universally provided, and pregnant women receive counseling to avoid harmful substances and medications.
However, despite these advancements, congenital disorders persist as a leading cause of neonatal and under-5 deaths, underscoring the need for continued vigilance and action. WHO is calling on Member States to prioritize birth defects in national agendas and enhance universal newborn screening and preventive interventions. Collaboration with community networks and the expansion of surveillance efforts are also crucial measures toward ensuring comprehensive care and support for individuals and families affected by birth defects.
As Devna, Aditya and many others carve their paths, embodying resilience, courage, and unwavering spirit, their story serves as a poignant reminder that every journey matters, inspiring us to embrace diversity and foster inclusion and collaboration, while accelerating actions to prevent, detect and care.