Medical Oncologist
CION Cancer Clinics
Screening a newborn sibling for retinoblastoma | CION Cancer Clinics
A baby whose brother or sister had retinoblastoma needs a specialist eye examination in the first weeks of life. If the family's RB1 fault is known, a simple test on the baby's blood can show whether the checks need to continue at all. This page explains what to arrange before the birth, what screening involves, and the one warning sign that needs a same-day call. At CION Cancer Clinics, our oncologists plan screening and care for families with an inherited cancer syndrome, explained in plain words.
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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
- Does our new baby need eye checks for retinoblastoma?
- Which of these situations is your family in?
- What does screening look like for a baby at risk?
- The terms on the appointment letters, in plain language
- Four things parents tell us, and what is actually true
- What this page cannot tell you
- Common questions about screening a newborn sibling
The short answer
Does our new baby need eye checks for retinoblastoma?
Yes, until you know otherwise. A baby whose brother or sister had retinoblastoma should have a specialist eye examination in the first weeks of life. Whether checks continue depends on one thing: whether the family's RB1 fault is known, and whether the baby has it.
Why start so early
In a baby who has inherited the fault, tumours can begin in the retina before or soon after birth. Found while they are tiny, they can usually be treated with the eye and its sight saved. Found later, when a parent notices a white glow in a photograph, the choices are fewer. Early checks exist to find tumours before anyone could see them.
Why the gene test changes everything
If the older child's exact fault is known, the baby can be tested for it from a blood sample. A negative result usually means the baby can stop the examinations. A positive result means a planned schedule of checks through early childhood, and nothing is left to chance.
Plan this before the birth. The eye team and the obstetrician both need to know.Your starting point
Which of these situations is your family in?
The plan for a newborn depends on what is already known about the older child's retinoblastoma.
The family fault is known
This is the clearest position. The baby is tested for that single change, often from cord blood collected at delivery. Eye checks begin in the first weeks and continue only if the result is positive.
The older child was never tested
Without a known fault, the baby cannot be tested directly. The eye team treats the baby as possibly at risk and examines on a schedule. Testing the older child now is usually the fastest route to clarity.
The older child tested negative in blood
The chance that the baby is affected is much lower. Some teams still offer a few precautionary examinations, because a blood test cannot rule out every hidden fault.
A parent carries the fault
Each baby has a one in two chance of inheriting it. Testing during pregnancy is possible, and so is testing straight after birth.
Worth discussing before delivery
- Collecting cord blood for the RB1 test
- Where and when the first eye check happens
- Whether the timing of delivery matters
Not sure whether this applies to you?
Ask an oncologist
!
One thing that cannot wait
If you see a white or yellow glow in your baby's pupil, in the mirror, in daylight or in a flash photograph, or the baby develops a new squint, call the eye team that day and ask for an urgent appointment. Do not wait for the next scheduled check. Tell them the baby's brother or sister had retinoblastoma. Most of the time it turns out to be something harmless, but it must be looked at quickly.
From pregnancy to school
What does screening look like for a baby at risk?
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During pregnancy
A genetic counsellor explains the options, including testing the baby before birth. Your obstetrician is told so cord blood can be kept for testing at delivery.
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The first weeks
An eye cancer specialist dilates the pupils with drops and examines the back of both eyes. A newborn can usually be examined awake, wrapped snugly, with no anaesthetic.
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The first year
If the baby carries the fault, or the answer is unknown, checks are frequent. This is when new tumours are most likely. As the baby grows stronger, examinations move to a short general anaesthetic.
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The toddler years
Checks become less frequent as the chance of a new tumour falls. Your team will tell you the gap between visits at each stage.
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Early school years
New tumours become very unlikely, and routine screening usually ends. A child who carries the fault still keeps lifelong follow-up for other reasons.
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Words you will hear
The terms on the appointment letters, in plain language
- Red reflex
- The normal red glow from the back of the eye in a flash photo. A white glow instead needs checking.
- Leukocoria
- The medical word for a white pupil. It is the most common first sign of retinoblastoma.
- Dilated eye examination
- Drops widen the pupil so the specialist can see the whole retina, including the edges.
- EUA
- Examination under anaesthesia. A brief general anaesthetic lets the doctor examine a moving toddler's eyes properly.
- Cord blood
- Blood taken from the umbilical cord after delivery. It can be used for the RB1 test with no needle for the baby.
- Proband
- The first person in the family found to have the condition. Here, the older child with retinoblastoma.
Commonly believed
Four things parents tell us, and what is actually true
"The baby's eyes look perfectly normal, so there is nothing to find."
Early tumours are invisible from the outside. They can only be seen by a specialist looking through a dilated pupil. That is the whole point of screening before any sign appears.
"Anaesthesia is too risky for a small baby, so we will skip the checks."
Newborns are usually examined awake. When anaesthesia is needed later, it is brief and given by a paediatric team. Discuss your worries openly, but a missed tumour is the greater danger.
"Our first child had it in one eye only, so the baby is safe."
One eye makes the inherited kind less likely, not impossible. Until the older child has been tested, the baby is examined as a precaution.
"If the baby tests negative, we have wasted a trip."
A negative result is the most useful outcome. It usually ends years of appointments, anaesthetics and travel from the district for that child.
Being straight with you
What this page cannot tell you
It cannot give you your baby's exact schedule. The gap between checks varies with the family's genetic result, the baby's age and the practice of the eye cancer team. Your team sets the plan, and it can change as results come in.
It cannot interpret the older child's report
Some RB1 results are clear and some are uncertain. What your specific variant means is a question for the counsellor who ordered the test. Take the report to them before the baby is born if you can.
Who this does not apply to
This page is for brothers and sisters of a child with retinoblastoma, and for babies of a parent who had it. It does not apply to cousins or wider family unless a counsellor has shown the fault could have reached them. Most cousins do not need screening.
Frequent visits from a district are hard. Ask the eye team which checks can be combined, and plan the travel early.Questions we are asked
Common questions about screening a newborn sibling
When should the first eye check happen?
In the first weeks of life, by an eye cancer specialist rather than a general eye clinic. Book it before the birth so there is no delay. Your team will give you the exact timing for your family's situation.
Can the baby be tested before birth?
If the family fault is known, yes. Testing in pregnancy uses a sample taken from around the baby, and carries a small risk of miscarriage. Many families prefer to test cord blood at birth instead. A counsellor will explain both choices without pushing either.
What happens if the baby's test is positive?
The baby starts a planned schedule of eye examinations, frequent at first. Tumours found this early are usually small and treatable with the eye kept. The baby also joins lifelong follow-up, because the fault is present in every cell.
Does a negative test mean no more eye checks?
Usually, yes, when the family fault was clearly identified. Some teams still do one or two routine checks. If the older child's fault was never found, a negative result cannot be given, and screening continues on the eye team's schedule.
Is the eye examination painful for the baby?
The drops can sting briefly and the baby may cry at being held still. It is uncomfortable rather than harmful. Feeding straight afterwards usually settles a newborn quickly.
Can our local eye doctor do the checks?
Routine vision checks, yes. Screening for retinoblastoma needs a specialist who examines the whole retina, including the far edges. It is worth travelling for, at least until the genetic result is known.
Do we need to screen older siblings too?
Brothers and sisters still of screening age should be examined or tested the same way. Older children beyond that age can still be tested for the family fault, which matters for their own later health and their future children.
Who do we call to set this up?
Start with the eye cancer team that treated your older child, and a genetic counsellor. Call the CION helpline if you are not sure where to go, and we will help you arrange it in time for the birth.
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
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
- MedlinePlus Genetics — Retinoblastoma
- American Cancer Society — 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.
Keep reading
Related pages
Examination under anaesthesia for screeningWhat happens when the checks move to a short anaestheticIs this retinoblastoma inherited?How testing the older child makes the baby's plan clearScreening siblings and children of a survivorThe wider family plan, not just the newbornRB1 and family planningChoices before and during the next pregnancy
Talk to us
Expecting a baby after a child with retinoblastoma?
Tell us what testing the older child has had and when the baby is due. We will help you plan counselling, the RB1 test and the first eye check in time. One helpline serves every CION centre.