Medical Oncologist
CION Cancer Clinics
Growing up with VHL: childhood, checks and handing over | CION Cancer Clinics
Most children who carry a VHL fault go to school, play sport and grow up much like their friends. What changes is a lifelong calendar of eye checks, blood or urine tests and, later, MRI scans, starting in infancy. This page explains how those checks change as your child grows, how to handle school, sport and sedation, and how to hand care over as your child becomes an adult. 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
- Can a child with VHL grow up like any other child?
- What changes at school, at play and at home?
- How do the checks change from baby to teenager?
- The words your child's reports will use
- How does responsibility pass from parent to young person?
- Four things parents fear, and what is actually true
- What this page cannot tell you
- Common questions about children and VHL
The short answer
Can a child with VHL grow up like any other child?
Mostly, yes. Most children who carry a VHL fault go to school, play, sit their exams and grow up much as their friends do. What is different is a calendar of checks that starts in infancy and carries on for life, so that any growth is found while it is still small.
Why the checks start so early
VHL can cause small growths in the back of the eye and, less often, a hormone-making tumour in the adrenal gland, even in young children. Both are far easier to treat when tiny, which is how early checks protect a child's sight.
What most families find
The first year after a diagnosis is usually the hardest. Once the routine settles, the check-ups become a fixed part of the year, like school admissions or the trip home for a festival. Many families in the districts plan the scans for school holidays, so that one journey to Hyderabad covers several tests.
A VHL fault in a child is a reason to watch closely. It is not a sign that something is already wrong.Everyday life
What changes at school, at play and at home?
Parents usually ask about the same four things. The honest answers are more reassuring than most families expect.
School and exams
Your child can attend an ordinary school. Tell the class teacher enough to explain missed days for appointments. You do not need to share the genetic details.
- Book scans outside exam weeks where you can
- Keep a doctor's letter in the school file
Sport and play
Most children need no limits on sport at all. If a growth is being watched in the brain, spine or eye, the team may advise against heavy contact games for a while. Ask about your own child.
Scans and sedation
Babies and young children often cannot lie still inside an MRI scanner, so a short sedation may be used if a scan is needed early. Older children usually manage without it.
Worry at home
Brothers, sisters and grandparents all pick up on anxiety. Talking plainly, in Telugu or whichever language the family uses at home, usually helps more than silence. A counsellor can help you find the words for each child.
Not sure whether this applies to you?
Ask an oncologistAs your child grows
How do the checks change from baby to teenager?
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In the first year or two
A yearly check-up with a doctor who knows VHL begins, including a blood pressure reading. Eye examinations by a retina specialist start early and carry on for life.
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In the early school years
A yearly blood or urine test for adrenal hormones is added. It looks for a phaeochromocytoma, an adrenal tumour, long before it would cause any symptom.
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In late childhood
MRI scans of the brain and spine are brought in, along with hearing tests. While nothing is being watched, these are usually repeated every other year.
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In the mid-teens
MRI of the abdomen is added to look at the kidneys and pancreas. It can often be done on the same day as the brain and spine scan, which saves a journey.
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Through the teenage years
The young person slowly takes charge of their own appointments, reports and questions, ready for the move to adult care.
On the reports
The words your child's reports will use
- VHL
- Von Hippel-Lindau, an inherited condition caused by a fault in one gene. It makes certain growths that are rich in blood vessels more likely in several organs.
- Haemangioblastoma
- A growth made of blood vessels, which does not spread like a cancer. In VHL it appears in the back of the eye, the brain or the spinal cord.
- Dilated eye examination
- A look at the back of the eye after drops widen the pupil. It does not hurt, though the drops blur vision for a few hours.
- Metanephrines
- Breakdown products of the stress hormones, measured in blood or urine. Raised levels can point to an adrenal tumour.
- Predictive test
- A test on a well relative for the exact fault already found in the family. In VHL it is usually offered in early childhood.
- Surveillance
- The planned schedule of checks. It finds growths early. It does not stop them forming.
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Who does what
How does responsibility pass from parent to young person?
Parent-led years
Teenage and young adult years
Parents book and attend every appointment
The young person books with help, then alone
Parents keep the reports
The young person keeps copies and a one-page summary
The doctor speaks mainly to the parent
The doctor sees the young person alone for part of the visit
Parents decide about tests and treatment
The young person joins decisions, then leads them
The family explains VHL in simple words
The young person learns to explain it to a partner or a new doctor
Commonly believed
Four things parents fear, and what is actually true
"We should wait until our child is older before testing."
For VHL, testing is usually offered in early childhood, because the checks that help begin in the first years of life. Waiting means either missing early growths or putting a child through checks they may not need. A child who tests negative for the family's fault can stop VHL checks altogether.
"A child with VHL cannot play sport."
Most children play normally. Limits are advised only for particular growths, for particular periods. Your team will tell you if one applies.
"If we tell our child, they will only be frightened."
Children usually cope better with simple, honest facts than with a secret they can sense anyway. Explaining in stages, as the child grows, lets understanding build without shock.
"Nobody will marry someone with VHL."
Many people with VHL marry and have children. When and how to tell a future partner's family is a real and personal question in Indian families. A counsellor can help the young person plan that conversation, and explain the testing choices open to them before or during a pregnancy.
Being straight with you
What this page cannot tell you
It cannot tell you what your own child's scans mean, or exactly when each check should start. Teams adjust the plan to the child and to what has already been found.
It cannot predict your child's course
Two children with the same family fault can have very different childhoods. One may go for years with clear scans. Another may need eye treatment early. Nobody can tell you in advance which path your child will take. What your child's specific variant means is a question for the counsellor who ordered the test.
Who this does not apply to
If your child has been tested for the family's known VHL fault and does not carry it, none of this applies. They need no VHL checks, and they cannot pass the condition on. Children in a family where no fault has been confirmed should be discussed with a counsellor before any checks begin.
Sudden changes in vision, severe headaches with vomiting or new trouble with balance should not wait for the next planned check. See a doctor the same day.Questions we are asked
Common questions about children and VHL
At what age should a child be tested for VHL?
Usually in early childhood, once the family's fault is known. VHL is one of the few inherited conditions where testing a young child clearly helps, because eye checks start in infancy. The counsellor arranges a test for the exact family fault, which is simpler and quicker than a full panel.
Does my child need sedation for every MRI?
Rarely for long. Babies and young children who need a scan early may need a short sedation to keep still. By the time routine brain and spine scans begin in late childhood, most children manage without it. A practice visit, headphones and a clear explanation of the noise help a great deal.
Should we tell our child's school?
Tell them enough to explain absences and to act on symptoms that need attention, such as a sudden severe headache or a change in vision. You do not have to share the genetic details. A short letter from your doctor for the school file is usually enough.
Can my child play cricket or football?
In most cases, yes. Sport is as good for a child with VHL as for any other child. If a growth is being watched in the brain, spine or eye, the team may advise avoiding heavy contact for a time. Ask about your own child, and ask again whenever the scans change.
When should we explain VHL to our child?
Gradually, from early on, in words that fit their age. A young child may only need to know that doctors check their eyes to keep them healthy. Older children can learn the name and why the scans matter. By the teenage years they should understand enough to ask their own questions.
Will the checks clash with board exams?
They do not have to. Most routine checks can be planned for holidays if you plan ahead. Give the team your child's exam calendar at the start of the school year, so that scans are not booked in the middle of board exams. Urgent checks are different and should never be delayed for exams.
How do families manage the cost of lifelong checks?
It is a fair worry, because the checks carry on for life. Ask whether Aarogyasri, Ayushman Bharat or an employer's insurance covers any of the scans. Ask the team too whether several checks can be done on one day, which cuts travel and time off work for families coming from the districts.
What happens when my child turns eighteen?
Care moves from a children's team to adult services, ideally with a planned handover. The checks themselves carry on. The main change is that the young person now consents for themselves and holds their own reports. Starting that handover in the mid-teens makes the move much smoother.
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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Sources
- GeneReviews (NCBI) — Von Hippel-Lindau Syndrome
- MedlinePlus Genetics — Von Hippel-Lindau syndrome
- Cancer.Net (ASCO) — Von Hippel-Lindau Syndrome
- 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.
Keep reading
Related pages
VHL surveillance from childhood onwardsThe full childhood check schedule, organ by organEye screening in VHLThe first check most children have, explainedVon Hippel-Lindau: every organ involvedWhat VHL can affect, and why each check existsTesting the family for VHLWhich brothers, sisters and parents should be tested
Talk to us
Planning your child's VHL checks around school?
Bring your child's reports and the family's genetic result. We will help you see which checks are due and how to fit them around school and travel. One helpline serves every CION centre.