India must invest in follow-up care for pre-term babies

An estimated 13.4 million babies were born pre-term worldwide in 2020, approximately one in every 10 births.

An estimated 13.4 million babies were born pre-term worldwide in 2020, approximately one in every 10 births. India accounted for around 3.02 million of these births, placing it among the countries with the highest pre-term birth numbers. The World Health Organization estimates that complications associated with preterm birth contribute to approximately one million deaths annually worldwide.

Baby (Unsplash)

Advances in respiratory support, infection management and neonatal technology have transformed survival prospects, including for babies born before 28 weeks of gestation. Yet survival alone does not tell the whole story. Children may face challenges involving movement, communication, vision, hearing, behaviour or learning that become apparent months or years later.

India has made progress in saving premature babies. The next priority must be ensuring that they have the opportunity to thrive. A baby weighing less than 500 grams survives against extraordinary odds. A child born at 28 weeks grows up to walk, learn, build relationships and pursue a dream. These are remarkable achievements of modern medicine. But survival is only the first milestone. The real measure of success is whether these children receive the care they need to grow, develop and realise their potential.

This World Prematurity Day, observed on November 15 this year, the theme ‘Small babies, big potential. Invest in follow-up care to protect their future’ calls for a fundamental shift in how India approaches premature birth. Neonatal care cannot end at hospital discharge. It must extend into childhood through structured follow-up, early intervention and sustained family support.

Prematurity is not a uniform risk. Babies born between 34 and 36 weeks may experience feeding difficulties, jaundice and temperature instability. Those born earlier, particularly before 28 weeks, face greater risks because their organs are still developing. Outcomes also depend on birth weight, medical complications, nutrition, the quality of neonatal care and access to follow-up services. An Indian prospective cohort study published in the Journal of Perinatology reported major neurodevelopmental impairment at 18 months’ corrected age in 12.8% of very and moderate pre-term infants, compared with 2.5% of term-born controls. The proportion was higher among babies born before 28 weeks. These findings reflect the study population, not national prevalence, but reinforce the need for systematic developmental surveillance. First 1,000 days are crucial for any baby to achieve their full potential more so in pre-term babies – be it nutrition, growth and development, achieving milestones and so on. The future of any child is dependent on their growth and development in the first 1,000 days – so survival of a pre-term baby is just the beginning and not the finish line.

A baby may appear stable, feed well and gain weight at discharge, yet later struggle with coordination, language or other developmental milestones. Waiting until a child falls noticeably behind can delay access to support when it may be most beneficial.

Premature babies miss critical weeks of growth in the womb. Their brains, bones, muscles and other organs are still developing, making appropriate nutrition and growth monitoring essential. Tracking weight alone is insufficient; length, head circumference, feeding and overall growth patterns must also be assessed. The Developmental Origins of Health and Disease (DOHaD) framework highlights how conditions during early development may influence health later in life, including metabolic and cardiovascular risks. This does not mean every pre-term child will develop long-term complications. It underscores the importance of providing appropriate nutrition, monitoring growth and addressing emerging concerns early.

Research published in JAMA Pediatrics indicates that cerebral palsy can be accurately diagnosed before six months’ corrected age using appropriate assessment tools. Earlier recognition can help children access suitable intervention and enable families to plan for their needs. Developmental screening must become a routine component of neonatal follow-up, not a service families discover only after noticing a problem. This is where Early Development Centres (EDCs) play a significant role in pre-term babies and unfortunately the growth of EDCs is not in line in India with the growth of NICUs.

Families leaving the Neonatal Intensive Care Unit (NICU) often face uncertainty about feeding, growth, milestones and warning signs. Without clear guidance, appointments may be missed, concerns overlooked and referrals delayed. The burden of navigating care should not rest entirely on parents.

Hospitals must provide counselling before discharge, an individualised written follow-up plan, appointment reminders and clear referral pathways. Neonatologists, paediatricians, ophthalmologists, developmental specialists, physiotherapists, nutritionists and speech and language therapists should collaborate according to each child's needs. The World Health Organization's recommendations for preterm and low-birth-weight infants recognise the importance of appropriate care and family involvement beyond immediate newborn treatment. India must translate this principle into consistent practice.

Three priorities deserve urgent attention.

First, make follow-up part of standard neonatal care. Eligible infants should leave hospital with a clear care plan, scheduled assessments and identified referral services. Follow-up should be treated as a continuation of treatment, not an optional extra.

Second, expand access to developmental services. Screening, specialist referrals and early intervention must reach families beyond major urban centres. Geography, financial constraints and a shortage of trained professionals should not determine whether a child receives timely support.

Third, measure outcomes beyond survival. Health systems should track follow-up attendance, growth, developmental assessments and access to intervention alongside neonatal survival. Better data can reveal gaps, strengthen accountability and guide investment towards services that children and families need.

These changes require coordinated action from health care providers, public health authorities and policymakers. Families need accessible information, affordable services and confidence that support will continue after discharge.

Every premature birth is different, and no intervention can guarantee a particular outcome. But team work is essential--specialists working together for the betterment of the premature baby help achieve the full potential. But health care systems can do more to identify difficulties early, reduce avoidable complications and give children the best possible start. India's progress in neonatal medicine must now be matched by investment in long-term developmental care. A child's future should not depend on whether their parents can afford repeated consultations, live near a specialist or recognise a developmental concern without professional guidance.

Saving a premature baby is a triumph of medicine. Protecting that baby's future is a public health responsibility. Measure progress not only by the lives we save, but also by the care we provide after survival. Every child deserves more than a successful discharge. Every child deserves the chance to grow, learn and participate fully in society.

Small babies do not have small futures. India must build a health care system that gives them every possible chance to realise those futures.

(The views expressed are personal)

This article is authored by Dr R Kishore Kumar, founder chairman, paediatrician and neonatologist, Cloudnine Group of Hospitals.