For a baby born with glaucoma, a rare eye disorder, the first months of life can determine how much vision can be saved. Yet many children in India reach specialist care only after the disease has advanced, leaving doctors to battle not just raised eye pressure but damage that may be difficult to reverse, warn AIIMS experts.
In an editorial in the latest edition of the Indian Journal of Ophthalmology, they have called for childhood glaucoma to be treated as a public health concern rather than a rare eye disorder.
The authors, Dr Viney Gupta, Professor of Glaucoma Services at Dr Rajendra Prasad Centre for Ophthalmic Sciences, AIIMS, New Delhi, and Dr Arnav Panigrahi, Research Associate in Glaucoma Services at the same centre, have called for earlier diagnosis, faster referrals and long-term support for affected children.
The financial burden can be substantial, too. The authors estimate that the lifetime cost of managing childhood glaucoma in India may exceed Rs 10–15 lakh per child when surgery, medicines, travel, caregivers' lost wages and future productivity losses are taken into account.
Glaucoma is commonly associated with older adults. But children can develop it too. In childhood glaucoma, pressure inside the eye may rise and damage the optic nerve, which carries visual signals from the eye to the brain.
Unlike in adults, the eye of a young child is still developing and can stretch under the pressure. This may cause the eyeball to enlarge and the normally clear cornea — the transparent front surface of the eye — to become cloudy.
Parents may notice that a baby is unusually sensitive to light, has excessive watering or keeps the eyelids tightly closed. The eyes may appear larger than usual, or the cornea may look hazy. These signs need prompt assessment by an eye specialist, although they can have causes other than glaucoma, said the experts.
The danger is that damage to the optic nerve can be permanent. If the condition is not treated in time, a child may lose vision during the very years when sight is crucial for learning, movement and development. Reduced vision can affect schooling, independence and quality of life long after the initial treatment.
The disease is not always present from birth, and childhood glaucoma can develop for different reasons. Primary congenital glaucoma occurs because the eye's drainage system has not developed normally, causing fluid to build up and pressure to rise.
Secondary forms may arise in association with other eye conditions, developmental disorders, previous surgery or injury, or the use of certain medicines, including steroids.
The editorial cites estimates suggesting that primary congenital glaucoma affects about one in 3,300 live births in southern India. It also refers to the Indian Childhood Glaucoma Study, conducted across 13 tertiary centres, which recorded 1,155 newly diagnosed children with glaucoma involving 1,743 eyes over one year.
Primary congenital glaucoma accounted for about one-third of cases, while secondary childhood glaucomas together made up more than half. These hospital-based figures, the authors pointed, may not capture the full burden because children who never reach specialist centres remain outside such records.
A major obstacle is recognising the disease early and ensuring that children reach the right facility. Families may not know that persistent watering, light sensitivity or a cloudy cornea could signal a serious eye problem, noted Dr Panigrahi. At peripheral healthcare facilities, symptoms may be mistaken for less serious conditions, delaying referral. Limited availability of paediatric glaucoma specialists and facilities equipped to examine young children can add to the wait, said the experts.
In some cases, children continue on medical treatment even when surgery is required. The authors noted that this can happen where specialist services or paediatric anaesthesia support are unavailable. Meanwhile, the eye may continue to enlarge, the cornea may develop scarring, and amblyopia — commonly called 'lazy eye' — may worsen.
Amblyopia occurs when the brain does not develop normal vision from an eye, and treatment becomes harder as a child grows older.
For primary congenital glaucoma, surgery is generally the first-line treatment and should be performed as early as possible to prevent further damage, said Dr Gupta. But an operation does not necessarily end the child's medical journey.
Children may need repeated examinations to monitor eye pressure, growth and optic nerve health. They may also require glasses or other refractive correction, treatment for amblyopia and further procedures if pressure remains uncontrolled, said the experts. Some examinations in very young children require anaesthesia, adding to the complexity and cost of care.
For families living far from tertiary hospitals, each visit can mean transport costs, missed wages and time away from other responsibilities. Parents must also cope with uncertainty about their child's future vision and the possibility of repeated procedures.
The burden, therefore, extends beyond the hospital bill to the daily demands of caregiving and the emotional strain of managing a lifelong condition.
The authors also drew attention to steroid-induced glaucoma, a potentially preventable form of the disease. “Steroid eye drops may raise eye pressure in some children, particularly when used for prolonged periods without appropriate medical supervision. Using such drops indiscriminately, including for allergic eye conditions, can cause serious harm,” warned the experts. The authors have called for greater awareness among healthcare professionals and pharmacists and caution against inappropriate steroid use.
Improving outcomes will require more than skilled surgeons, the ophthalmologists argued. General eye-care providers need better awareness of warning signs, while referral networks must help children reach specialist services without delay, they said.
