Medical Oncologist
CION Cancer Clinics
Eye screening for the siblings and children of a retinoblastoma survivor | CION Cancer Clinics
Brothers and sisters of a child with retinoblastoma, and children of a survivor, are usually offered regular eye examinations from birth until genetic testing shows they did not inherit the fault. The checks are frequent in the first months and spread out as the child grows. This page explains who needs them, what happens at each one, and the signs at home that should not wait. At CION Cancer Clinics, our oncologists explain what a gene result means for you and your family, and plan the checks that follow.
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Medically reviewed by Dr. Naresh GunduConsultant Medical Oncologist · MBBS, DNB (Internal Medicine), DM (Medical Oncology, AIIMS) · last reviewed September 2026, next review due September 2027
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On this page
- Which children need eye screening, and for how long?
- Does my child need screening?
- What happens at a screening visit?
- The terms on the eye report, in plain language
- Four things parents tell us, and what is actually true
- What this page cannot tell you
- Common questions about screening children for retinoblastoma
The short answer
Which children need eye screening, and for how long?
Any child who could have inherited the family's RB1 fault needs regular eye examinations from birth until a genetic test rules it out. A child who does carry the fault keeps having checks until early school age, when new tumours become rare.
Why screening starts at birth
Retinoblastoma can begin in the first weeks of life, and sometimes before birth. Small tumours at the edge of the retina, the light-sensing layer at the back of the eye, cannot be seen by parents or at a routine baby check. A specialist finds them by widening the pupils and looking at the whole retina.
Why checks become less frequent
The cells of the retina stop dividing in early childhood, and new tumours become uncommon after that. So checks are closest together in infancy and then spread out. The exact schedule depends on each child's risk, and the eye team sets it.
A genetic test showing a child did not inherit the family fault is the one thing that can stop the checks early.Who is offered checks
Does my child need screening?
The answer depends on who had retinoblastoma and what testing has already shown.
Children of a survivor
The highest priority. Checks begin soon after birth, ideally alongside a genetic test on the baby's blood.
Arrange before the birth
- Tell the obstetrician about the family history
- Book the first eye examination in advance
- Ask for a cord blood sample for testing
Brothers and sisters
Screened until testing shows they did not inherit the fault. If no fault was found in the affected child, a lighter schedule may still be advised for a while.
When a parent's status is unknown
A parent treated for retinoblastoma decades ago may never have been tested. Their child is screened as if at risk while the parent's test is arranged.
Cousins and wider family
Screened only if their own parent is shown to carry the fault, or while that is still being worked out.
Not sure whether this applies to you?
Ask an oncologist
!
One thing that cannot wait
If a child in an RB1 family has a white glow in the pupil, often noticed in a flash photograph, a new squint, or a red and swollen eye, call the eye team the same day and ask for an urgent examination. Do not wait for the next booked check. Do not accept that it is just the camera from anyone who is not an eye specialist.
At each visit
What happens at a screening visit?
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The first check is booked early
Tell the maternity team about the family history before the birth, so the baby's first examination happens in the first weeks of life.
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Drops widen the pupils
Drops go into both eyes and take a little while to work. The pupils stay wide for some hours afterwards, which is harmless.
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Young babies are often examined awake
A newborn can usually be examined while wrapped snugly, with a small instrument gently holding the eyelids open. It is brief, and babies settle quickly afterwards.
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Older babies usually need a short anaesthetic
Once a baby is too strong to keep still, a short general anaesthetic lets the specialist see the whole retina properly. The child usually goes home the same day.
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You hear the result on the day
The specialist tells you whether anything was seen and when the next check is due. If a tumour is found, treatment planning begins quickly.
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Words you will hear
The terms on the eye report, in plain language
- Retina
- The thin light-sensing layer at the back of the eye, where retinoblastoma grows.
- Dilated examination
- An eye check after drops have widened the pupil, so the specialist can see the edges of the retina.
- Examination under anaesthesia
- The same check done while the child is briefly asleep. Often shortened to EUA.
- Leukocoria
- A white glow in the pupil instead of the usual red. It is the most common first sign of retinoblastoma.
- Squint
- An eye that turns in or out. In an at-risk child it needs checking promptly.
- Screening schedule
- The planned dates for each check. It is set for your child and changes as they grow.
Commonly believed
Four things parents tell us, and what is actually true
"Our paediatrician checks his eyes at every vaccination."
That routine red reflex check is useful for every baby. It can miss small tumours at the edge of the retina. A child at risk needs a specialist looking with the pupils widened.
"She sees perfectly, so there is nothing there."
Small tumours do not affect sight. By the time vision changes, a tumour is often large. Screening exists to find tumours long before anyone could notice them.
"Repeated anaesthesia will harm my baby."
It is a fair worry. Research on repeated anaesthesia in young children is still going on. The anaesthetics used are short, and the team keeps their number to what is needed. A missed tumour is a clearer harm. Ask the anaesthetist to talk it through.
"The first few checks were clear, so we can stop."
New tumours can appear at any point in early childhood. Stopping early is a common reason a tumour is found late. Only a negative genetic test or the eye team should end screening.
Being straight with you
What this page cannot tell you
It cannot give you your child's schedule. How often a child is checked depends on the family's result, the child's age and what earlier checks showed. Only the eye team that examines your child can set it.
It cannot read the genetic report
What your specific variant means is a question for the counsellor who ordered the test. Some RB1 faults cause tumours in fewer children than others, and that can change how intensive screening needs to be.
Who this does not apply to
Most children do not need retinoblastoma screening. If the family's testing is complete and shows a child did not inherit the fault, routine baby eye checks are enough. Adults do not need screening for retinoblastoma either, though adult carriers have other health checks to think about.
If you live in a district far from Hyderabad, ask the eye team to plan visits so that travel, fasting and anaesthesia fit into one day wherever possible.Questions we are asked
Common questions about screening children for retinoblastoma
How often will my baby need eye checks?
Most often in the first year of life, then less often as the child grows. A baby known to carry the fault is checked more often than a sibling whose result is still pending. The eye team gives you a written schedule and adjusts it after each visit.
At what age does screening stop?
For a child who carries the fault, usually around early school age, once new tumours have become unlikely. For a child whose test shows they did not inherit it, screening can usually stop as soon as the result is confirmed. The eye team makes the final call.
Can a local eye doctor in our district do the checks?
For an at-risk child, checks are best done by a team experienced in retinoblastoma, who can also treat a small tumour promptly if they find one. A local eye doctor is still valuable for anything urgent between visits, and for general eye care.
Is examination under anaesthesia safe?
It is a short, routine procedure in children's hospitals, and serious problems are uncommon. Your child will need to fast beforehand, and the anaesthetist will check them on the day. Ask any question you have. A fair worry deserves a clear answer.
What if a tumour is found at a screening check?
Tumours found at screening are usually small. Small tumours can often be treated with laser or freezing directly in the eye, and the eye and its sight are often saved. Treatment planning usually starts straight away with the eye cancer team.
Are both eyes checked every time?
Yes. In a child who carries an RB1 fault, a tumour can appear in either eye, and often in both. Even if one eye has already been treated, the other is examined carefully at every visit.
Our baby was born before the test result came back. Should we wait?
No. Start eye checks on schedule and let the test catch up. If the result shows the baby did not inherit the fault, checks can stop then. Waiting for the result first risks missing a tumour that began early.
Is screening covered by Aarogyasri or insurance?
Coverage for screening visits varies. Cancer treatment for children is covered under several government schemes, but routine checks and anaesthesia may be handled differently. Ask the hospital's insurance desk before the first visit so there are no surprises.
Your Specialists
Meet CION's oncologists. Bring your family history or genetic report to them.
Our medical oncologists see people with a strong family history of cancer, arrange genetic counselling and testing where it fits, and plan the checks that follow.
Medical Oncologist
Dr. C. Raghavendra Reddy
MBBS(Gold Medal), DNB(General Medicine), DM(Medical Oncology)(Gold Medal)
Medical Oncologist
Dr. Bharati Devi Gorantla
MBBS, MD(General Medicine), DM(Medical Oncology)(Adyar,Chennai), ECMO, MRCP SCE(UK)
Medical Oncologist
Dr. Owais Mohammed
MBBS, MD (General Medicine), DrNB (Medical Oncology), ECMO, MRCP SCE (Medical Oncology) (UK)
Medical Oncologist
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Where to find us
Our centres in and around Hyderabad
Addressed by landmark, because that is how this city navigates. One helpline books a consultation at any of these centres, and your team will tell you where counselling and testing take place.
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Sources
- GeneReviews (NCBI) — Retinoblastoma
- National Cancer Institute — Retinoblastoma Treatment (PDQ) – Patient Version
- American Cancer Society — Retinoblastoma
- MedlinePlus Genetics — Retinoblastoma
This page is general information, not a prescription. Do not change or stop any treatment based on what you read here. If anything is worrying you, contact your own treating team — or call our helpline and we will help you reach the right specialist.
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Related pages
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Worried a child in the family has not been checked?
Tell us who had retinoblastoma and which children are due for checks. We will help arrange testing and point you to the right eye team. One helpline serves every CION centre.