Retinoblastoma is a fast-growing cancer of the eye. Insight asked the Childhood Eye Cancer Trust (CHECT) to explain the implications for children, parents and schools
Retinoblastoma (Rb) most commonly affects children up to the age of five, and very rarely, a smaller number of older children too. Each year in the UK 50–60 children are diagnosed with Rb. It can occur either in one eye or in both. Although it is a life-threatening cancer, 98 per cent of children survive retinoblastoma in the UK. Rb can be inherited, so babies with a family history of Rb should be screened regularly from birth. Early detection is crucial to give the best chance of saving the child’s vision, eyes and life.
Doctors work with families to decide which treatments will result in the best outcome.These can include laser, cryotherapy, chemotherapy, radiotherapy and surgical removal of an eye (enucleation).
Seventy per cent of children with Rb in one eye end up losing their eye, and many children with Rb in both eyes are left with a visual impairment.
Many children with monocular vision (sight in one eye only) experience few or no problems, adapting very quickly to their change in sight. In part this can depend on the level of vision they had before their eye was removed.
Children usually adapt by turning their head and body slightly more, to see things in the periphery. They often also try to position themselves so that people are sitting to their sighted side to reduce the need to turn their bodies.
The earlier a child loses their eye, the less likely they are to experience the difficulties described below. However children with additional needs may find it more difficult to develop adaptive skills.
When leading a young child by the hand, hold the hand on their blind side. Road safety must be emphasised as the child may be less aware of traffic approaching on their blind side. Protective eyewear and sports goggles are recommended for some PE activities to minimise any risk to the child’s remaining vision; extra care should also be taken in lessons such as science, design technology and cookery.
With sensitive awareness from all concerned, children often find their monocular vision doesn’t limit them in any way. Parents share what it’s like for them:
“It never stops them doing what they want to do. My daughter learned to ski at five. She is amazing.”
“If I could offer one piece of advice to any parent of a newly diagnosed child it would be to treat your child as you would any other – don’t be over-protective and wrap them in cotton wool, teach them to be independent. The hard bit, as parents, is allowing them to overcome that challenge!”
“After her operation, Kelsey started to become very withdrawn and self-conscious about her eye. So we took her to the local dancing school to mix with others, as she hadn’t yet started nursery. This worked wonders. Her confidence grew, her co-ordination improved…”
“I wish I could have told myself that six years later no-one would even notice her magic eye and that life is completely normal.”
The comfort and fit of a child’s eye varies, affected by colds, stress, distress and puberty to name but a few factors. The aim is to minimise the discharge from the eye while reducing the risk of infection. The more often an artificial eye is removed, the more opportunity there is for infection to start, but the eye and socket must be kept clean. Some people remove and wash their eye(s) every day, while others don’t remove their eye between clinic appointments. Each individual varies as to how often they need to clean their eyes.
Initially, it is important for children to get used to having the eye removed and replaced. Some prosthetists (specialists who fit artificial eyes) recommend daily cleaning, with cool boiled water, others say less frequently, but the important thing is for the child to become comfortable with this process as soon as possible. When the child is used to this, or even doing it themselves, the right balance can be found. It is important to clean around the eye with cooled boiled water, even if the eye itself is not removed.
Especially in the early days, it is common for parents and children to have difficulties learning how to remove and replace the artificial eye.
Parents often find it useful to meet their child’s teacher and support staff before they start or return to school. Some parents also find it useful to explain to the child’s class what an artificial eye is and why their child has one – other children’s negative comments are often because no one has helped them to understand.
Children’s reactions to having an artificial eye differ wildly. Parents can try to arm their child with answers they are happy to deliver with confidence when their friends quiz them. If a child is becoming upset by undue attention or bullying, speak to the class teacher or head teacher.
In their teens, young people sometimes become more conscious of their artificial eye. Encourage them to focus on their strengths and not to view themselves as different.
We’ll give the last word to a young person with a great attitude: Lottie, age 17 says, “I’ve never let my eye get in the way of school. Never have I not been able to get stuck in with my class mates thanks to my eye…Some people think that living with an artificial eye would affect your day-to-day life but they couldn’t be more wrong.”
The Childhood Eye Cancer Trust is a UK charity that supports families and individuals affected by retinoblastoma.
Tips to help parents think through what their child could do or say if they face any negative comments go to the Childhood Eye Cancer Trust website.