Medical Oncologist
CION Cancer Clinics
VHL in children: the checks that start early | CION Cancer Clinics
Children who carry a VHL fault need their first checks in infancy, starting with the eyes, because some growths appear well before adulthood. Further checks are added in stages through childhood and the teenage years. This page explains when a child should be tested, what each stage involves, how to make scans easier for a young child, and how a teenager gradually takes charge of their own care. 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
- Why do VHL checks start in childhood?
- How can you make the checks easier for your child?
- How do the checks change as a child grows?
- What changes if a child carries the fault, and what if they do not?
- What this page cannot tell you
- Four things parents tell us, and what is actually true
- Common questions about VHL checks in children
The short answer
Why do VHL checks start in childhood?
Because some VHL growths, especially in the eye and the adrenal gland, can appear in children. Found early, they are usually small and treatable. Found late, they can cost sight or cause dangerous spikes in blood pressure. Starting checks in childhood is how a family stays ahead of that.
Test the child first, then decide on checks
Once the family's exact VHL fault is known, a child can be tested for it with a small blood sample. VHL is one of the conditions where testing in childhood is generally advised, because checks start young and genuinely help. A child who tests negative can skip the whole schedule. A child who carries the fault starts it.
What most childhood checks find
Usually nothing, or nothing that needs treatment. Most children with VHL feel well and lead ordinary lives at school and at play. The checks are there for the smaller number of growths that appear early, not because trouble is expected every year. Parents often find the first clear results a real relief.
A clear check means nothing has grown yet. It does not mean the child has outgrown VHL.Practical help
How can you make the checks easier for your child?
Each check has its own challenge for a small child. A little planning takes most of the fear out of them.
Eye examinations
Drops widen the pupils, and the specialist looks at the back of the eye with a bright light. Very young children can find this hard to sit through. Some teams examine them under a short anaesthetic so that nothing is missed.
MRI scans
A scan of the brain and spine takes a while, and the child must lie very still. Younger children often need sedation or a short anaesthetic. Older children can usually manage awake if they know what to expect.
Ask whether all the scans due can be done in one session, to limit how often sedation is needed.Blood and urine tests
The adrenal hormone test uses a blood or urine sample. For the blood test, the child may be asked to lie down and rest before the sample is taken. Numbing cream on the skin makes the needle easier.
Talking to your child
Children cope better when they know what is coming.
Things that help
- Explain each visit simply, a day or two before
- Bring a favourite toy, book or snack
- Let older children ask the doctor questions themselves
- Plan something pleasant for after the visit
Not sure whether this applies to you?
Ask an oncologistStage by stage
How do the checks change as a child grows?
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Before the first birthday
A check-up with a doctor who knows VHL, including blood pressure, and the first eye examination by a retina specialist. Both are then repeated at least yearly.
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The early school years
A yearly blood or urine test for adrenal hormones is added. Hearing tests are brought in during childhood and repeated every few years.
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Late childhood and the early teens
MRI of the brain and spine begins, usually repeated every other year or so while nothing is being watched.
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The mid-teens
MRI of the abdomen is added, to look at the kidneys, pancreas and adrenal glands. It is often booked alongside the brain and spine scan.
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The late teens
The young person starts seeing the doctor alone for part of each visit, learns the names of their own tests and moves across to an adult VHL team with their records.
!
Signs in a child that cannot wait
In a child with VHL, a sudden change in vision, a squint that appears suddenly, a severe headache with vomiting, new clumsiness or unsteady walking, or episodes of pounding heartbeat with sweating, paleness and headache need a doctor the same day. Go to the nearest emergency department and tell the staff the child has VHL. Before any operation, even a minor one, make sure the surgeon and anaesthetist know about VHL.
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Side by side
What changes if a child carries the fault, and what if they do not?
Child carries the family fault
Child tested negative
Eye checks start in infancy
No VHL eye checks needed
Scans are added in stages through childhood
No VHL scans at any age
Doctors must know about VHL before any operation
Treated like any other child
Their own children can be tested in future
Cannot pass the family fault on
Being straight with you
What this page cannot tell you
It cannot set your child's schedule. Starting ages differ slightly between published guidelines, and your child's team will adjust the plan to your family history and your child's own findings. What your family's specific variant means is a question for the counsellor who ordered the test.
It cannot tell you how your child will feel
Some children take checks in their stride. Others grow anxious as scan days approach, especially in the teenage years. Ask the team about support, and do not assume a quiet child is untroubled. A counsellor can help you explain VHL in words that suit your child's age, in Telugu if that is easier at home.
Who this does not apply to
Children who have tested negative for the family's known fault do not need these checks. Children in families with no confirmed VHL result should not be put on this schedule on suspicion alone. The first step is testing the affected relative, arranged through a counsellor.
If you are unsure whether your child needs testing, call the helpline and describe what you know about the family result.Commonly believed
Four things parents tell us, and what is actually true
"Children are too young for a genetic test."
For conditions that only affect adults, testing often waits. VHL is different. Checks start in infancy, so knowing early whether a child carries the fault decides whether they need those checks at all.
"Sedation for scans is too risky to repeat."
Sedation and short anaesthetics for scans are routine in children's hospitals and are closely monitored. Teams reduce how often they are needed by combining scans, and older children usually manage without them.
"The eye check was normal, so we can skip next year."
An eye growth can appear between checks and cause no symptoms at first. Regular checks catch it while laser or freezing treatment can still protect sight. A normal result is the reason to keep going, not to stop.
"A child with VHL cannot play sport or lead a normal life."
Most children with VHL go to school, play sport and grow up like their friends. A few activities may need a word with the doctor if a growth is being watched, but an ordinary childhood is the rule, not the exception.
Questions we are asked
Common questions about VHL checks in children
At what age should my child be tested for VHL?
Many families test in infancy or early childhood, once the family fault is known, because the first eye check is due in the first year. Your counsellor will suggest timing that suits your family. The test is a small blood sample, and the laboratory will give you its own timeline for results.
Does my child need an anaesthetic for the eye check?
Not always. Many children manage with eye drops and patience. Very young or anxious children are sometimes examined under a short anaesthetic, so the whole retina can be seen properly. Your eye specialist will suggest what suits your child.
Will all these checks affect school?
Most checks take a morning or a day. Booking them together, and in school holidays where possible, limits missed days. A short letter from the team can help if absences add up over a year, without sharing more detail than you want to.
Should my child's school know about VHL?
It is your choice. Many families tell the class teacher about warning signs such as a sudden change in vision or a severe headache, so the school knows to call home at once. You do not have to share the genetic result itself.
When should we tell our child they have VHL?
Gradually and honestly, in words that suit their age. Most children cope better when checks are explained rather than kept mysterious. By the teenage years they should know the name of the condition and why each check matters. A counsellor can help you plan these talks.
What happens when my child becomes an adult?
Care moves from the children's team to an adult VHL team. Ask for a planned handover, with every past report sent across. Young adults often miss checks during college or a first job, so this is a stage for the family to watch gently but closely.
Can the checks be done closer to our district?
Blood tests and some eye checks can often be done nearer home. Children's MRI with sedation needs a centre set up for it, so some travel is usually needed. Keep every report and scan disc in one folder, and bring it to each review.
Where do we start if a parent has just tested positive?
Ask the counsellor who gave the parent's result to arrange testing for the children. Children who carry the fault can then begin checks at the right stage. Call the CION helpline if you are not sure who to approach, and someone will point you to the right clinic.
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)
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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) — Von Hippel-Lindau Syndrome
- MedlinePlus Genetics — Von Hippel-Lindau syndrome
- MedlinePlus Genetics — VHL gene
- National Cancer Institute — Genetic Testing for Inherited Cancer Susceptibility Syndromes
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.
Talk to us
Does your child need VHL testing or checks?
Tell us what you know about the VHL result in your family and your child's age. We will help you arrange counselling, testing and the right first checks. One helpline serves every CION centre.