Finding out your baby or child has glaucoma can be devastating news. It’s normal to feel confused and worry how the disease will affect your child’s vision now and into the future. But there is much that can be done to save their sight. This is an introduction to childhood glaucomas. More detailed information can be found in our ‘Glaucoma in Babies and Children’ booklet which includes information on treatments and how you can help your child live well with glaucoma.
About five in 100,000 children are born with glaucoma, or develop it in childhood.
The term ‘infantile glaucoma’ is sometimes used for diagnosis before the age of three. In most cases, it is discovered before the child’s first birthday.
To understand how glaucoma affects the eye, it’s useful to understand the structure of the eye and and how drainage in the eye works. You can find this information on our ‘What is glaucoma?’ page.
The most common glaucoma in babies and small children. It occurs when the eye hasn’t developed properly in the womb and this leads to issues with the flow of aqueous fluid out of the eye. If the fluid is unable to drain effectively, it builds up inside the eye and causes the eye pressure to rise. This causes stress to the optic nerve, and may lead to permanent damage to vision. Glaucomas of this type tend to run in families.
Secondary glaucomas in babies and children are usually the result of another condition. These include Axenfeld-Rieger’s Anomaly, where there may be developmental issues with various parts of the eye and Peter’s Anomaly where there are abnormal developments in the lens and cornea.
Glaucoma often follows cataract surgery in babies and young children. Cataract surgery replaces the lens in the eye if it has become cloudy, but the reason for the development of glaucoma after cataract surgery is still not well understood.
Glaucoma can also occur if the eye becomes inflamed for any reason, such as in children who have a childhood form of arthritis, as the drainage channels may get blocked with inflammatory cells.
Glaucoma can sometimes occur in children with other conditions such as aniridia, in which there is no, or very little, development of the iris. Glaucoma can also occur in Sturge-Weber syndrome; people with Sturge-Weber syndrome have a blood vessel birth mark on the face, often on the forehead, known as a port wine stain. Children with these signs will need to be monitored for the development of glaucoma.
If symptoms of high eye pressure are seen, the doctor may want to carry out a more detailed examination. Babies and children usually have to be examined under anaesthetic. If eye pressure is found to be raised, they may carry out surgery at the same time to save further anaesthetic. Generally, a child can be examined without anaesthetic if they’re aged five and over.
Detailed information about surgical treatments, medication and follow up can be found in our booklet Glaucoma in Babies and Children
Large eyes – The outer coat of a child’s eye (the sclera) is much softer and more flexible than that of an adult. As a result, if the pressure rises in the eye, the eye may expand. The enlarged eye size is one of the important indicators of raised eye pressure in a baby or young child.
Sensitivity to light – children with raised eye pressure often become sensitive to light.
Cloudy eyes – If the pressure rises to a sufficient level, aqueous is pushed into the cornea making it waterlogged and cloudy. This clouding can clear if the pressure is reduced but this may take several months.
Poor vision and jerky eyes (nystagmus) – Occasionally, if raised pressure in the eye has caused clouding of the cornea or pressure on the head of the optic nerve (the small hole where the nerves leave the back of the eye), vision may be poorer than usual and there may be jerky movements of the eye. After treatment, most of these symptoms improve.
Squint (strabismus) – In some children, the eye with poorer vision may be seen to tun inwards or outwards.
Watering eyes – Watering is a natural response to any type of eye irritation. If the pressure is too high, there is glare from lights and some swelling of the cornea, and the natural reflex will be watering eyes. This should improve when the pressure in the eye is lowered.
Glaucoma in families – The majority of glaucoma in children is not obviously inherited. Families with a history of childhood glaucoma should consult a genetic counsellor or specialist in childhood glaucoma regarding the possibility of inheritance.
When my son Thomas was born the midwife knew something was wrong. His eyes were a cloudy blue.
Meeting other people who care for family members with glaucoma can be a great way of building your confidence and sharing experiences.
We help support Glaucoma Support Groups (GSG) across the UK.
If there isn’t a GSG in your hospital or local area, speak to your ophthalmology team to let them know you are interested. Otherwise, get in touch with our Head of Support Services, Joanna Bradley, on firstname.lastname@example.org, so we know where to focus our efforts.