Information for health visitors

Retinoblastoma summary

Retinoblastoma (Rb) is a cancer of the eye affecting the retina. It can be unilateral, affecting one eye, or bilateral, affecting both eyes. It presents in babies and young children with the majority of cases being diagnosed before the first five years of life.

Retinoblastoma is very rare with between 40 to 50 cases in the UK each year. Although 98% of children survive retinoblastoma in the UK, delays in diagnosis can lead to loss of vision and eyes or even death.

As health visitors play such an important role in the early stages of a child’s life, it is crucial that you are aware of the signs and symptoms of retinoblastoma. Your actions can help to ensure a swift referral pathway for suspected cases.

For more information please have a look at our Would you recognise it? leaflet.

Signs and Symptoms of retinoblastoma

There are several signs which could indicate retinoblastoma. It’s important to remember that a child with retinoblastoma will usually appear well in themselves, so it’s essential to listen carefully to any concerns parents may have about their child’s eyes.

Page 18 of the Personal Child Health Record has a section called “Can your baby see?” which lists the main symptoms of retinoblastoma, so it may be useful to make parents aware of this page when you’re speaking to them.

Leukocoria/white eye

A white pupillary reflex, known as leukocoria, is the most common sign of Rb. This is sometimes described by parents as a ‘cats eye glow’ in appearance and is often seen on photographs taken using flash photography, instead of the common red eye.


This was a symptom for a third of children diagnosed between 2012 and 2015. Squints are commonly picked up by health visitors and of course, not all are Rb. However it is important to ensure that all squints are checked with a red reflex test (usually performed by a GP) to rule out eye cancer before any referrals to squint clinics are made, as this can unwittingly cause delays in diagnosis.

Poor vision

In small babies poor vision may present as the inability to ‘fix and follow’, a tendency to focus only on bright lights or lack of interest in the face of carers. In young children a reduction in visual acuity may be detected by reports of a toddler becoming more clumsy and bumping into things, sitting close to the TV, or bringing small objects very close to the eye to see them.

Change in colour

Change in the colour of the iris or part of the iris.

No red reflex

An absence of red reflex when doing a red reflex test.

Red, sore eye

Inflammation, redness or increased pressure in or around the eye without an infection.
Family history of retinoblastoma

Retinoblastoma can be heritable, so it’s essential that babies born to parents who had retinoblastoma or with affected siblings have regular eye examinations until they are five, unless genetic testing shows that it is not needed for a particular child.

Routine eye checks are part of the Newborn and Infant Physical Examinations (NIPE). However, there is no eye screening of children from the age of eight weeks until school health checks at four or five years, which is the peak age of diagnosis of retinoblastoma (eg average ages of diagnosis are nine months for heritable Rb, and 24 months for non-heritable unilateral Rb).

Health visitors often ask about vision concerns and look for squints in routine health reviews, and the importance of this to retinoblastoma diagnosis is imperative.


Where any of the signs or symptoms of Rb have been noted, families must be urged to see their GP or optician as soon as possible. The GP should perform a direct ophthalmoscope examination of the eye. This is known as a red reflex test.

If retinoblastoma is suspected the child must be referred to a paediatric ophthalmologist urgently.

More information

For more information please have a look at our Would you recognise it? leaflet. You might also find our resources for healthcare professionals useful.

For referrals and information contact the Rb teams in London and Birmingham at: