Medical Oncologist
CION Cancer Clinics
Planning a family when you carry a VHL fault | CION Cancer Clinics
If you or your partner carries a VHL fault, each pregnancy has a one in two chance of passing it on. You still have real choices, from conceiving naturally and testing the baby after birth to testing during pregnancy or testing embryos through IVF. A woman with VHL also needs extra checks before and during pregnancy. This page explains each option and who to speak to first. 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
- Can you have healthy children if you carry a VHL fault?
- What options do couples actually have?
- What should you do before trying for a baby?
- The words you will meet, in plain language
- Testing after birth or testing before it: how do they compare?
- What this page cannot tell you
- Four things couples tell us, and what is actually true
- Common questions about VHL and having children
The short answer
Can you have healthy children if you carry a VHL fault?
Yes. Many people with VHL have children, and a child who inherits the fault can be checked from early life so that growths are found while they are small. Each pregnancy carries a one in two chance of passing the fault on, so planning is about knowing early, or choosing not to pass it on.
Why the chance is one in two
You have two copies of the VHL gene, one from each parent. If one copy is faulty, each egg or sperm you make carries either the faulty copy or the working one. It is a coin toss for every pregnancy, and it is the same whether the mother or the father carries the fault. A child who has escaped it does not change the odds for the next child.
When the fault is new in you
About one in five people with VHL are the first in their family to have it. The fault appeared in them and was not inherited. Once present, it is passed on in exactly the same way. Parents are still usually offered a test, because a parent can occasionally carry the fault in only some of their cells.
Planning a family is the couple's decision. A counsellor's job is to explain the options, never to choose for you.Your choices
What options do couples actually have?
None of these is right for everyone. Couples choose differently, and some change their minds between pregnancies.
Conceive naturally, test after birth
The most common path. The baby is tested for the family's fault in early life. A child who carries it starts eye checks in the first year and further checks as they grow.
What it involves
- No procedure during pregnancy
- A simple blood test for the baby
- Lifelong checks if the result is positive
Test during the pregnancy
A sample from the placenta or the fluid around the baby is tested for the family's exact fault. Couples use the result to prepare, or to make decisions about the pregnancy, within the limits Indian law allows.
Test embryos before pregnancy
Through IVF, embryos are tested for the fault and one without it is placed in the womb. This is called preimplantation genetic testing. It is costly, needs months of preparation and can take more than one attempt.
Donor egg or sperm, or adoption
Using an egg or sperm from a donor who does not carry the fault removes the chance of passing it on. Some couples choose adoption. A counsellor will talk these through without pushing you either way.
Not sure whether this applies to you?
Ask an oncologistBefore you try
What should you do before trying for a baby?
Confirm the exact fault
Every option depends on knowing the precise VHL variant in your family. If the person with VHL was never tested, that test comes first. It usually needs only a blood sample.
See a genetic counsellor together
Go as a couple. The counsellor explains the chance for each pregnancy and each option in plain language, in Telugu if you prefer, and answers the questions families are often shy to ask.
If the woman has VHL, get checked first
An adrenal hormone test, an eye examination and brain and spine imaging before conceiving mean any growth that needs treatment is dealt with before pregnancy, not during it.
Plan the pregnancy with the right team
Tell your obstetrician about VHL at the first visit. The adrenal test is usually repeated in pregnancy, eye checks continue, and any scan is done without contrast.
On your report
The words you will meet, in plain language
- Autosomal dominant
- One faulty copy is enough to cause the condition, and it can come from either parent. This is why each child has a one in two chance.
- De novo
- A fault that appeared for the first time in one person and was not inherited from either parent. Once present, it can be passed on.
- Mosaicism
- The fault is present in only some of a person's cells. A mosaic parent can test negative in blood and still pass it on.
- Prenatal diagnosis
- Testing the baby during pregnancy, using a sample from the placenta or the fluid around the baby.
- PGT-M
- Preimplantation genetic testing for a single-gene condition. Embryos made through IVF are tested before one is placed in the womb.
- Phaeochromocytoma
- An adrenal tumour that releases stress hormones. It matters most in pregnancy, which is why it is checked for before and during.
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Side by side
Testing after birth or testing before it: how do they compare?
Test the baby after birth
Test before or during pregnancy
No procedure during pregnancy
Needs IVF, or a sample taken from the pregnancy
Lowest cost of the options
Higher cost, especially IVF with embryo testing
A child who carries it is checked from infancy
The couple decides before a pregnancy begins or continues
Suits couples comfortable with the one in two chance
Suits couples who want to avoid passing it on
Being straight with you
What this page cannot tell you
It cannot choose for you. Each option carries different costs, waiting times and feelings, and couples weigh them differently. What your specific variant means is a question for the counsellor who ordered the test.
It cannot tell you what applies in your case
Testing during pregnancy and embryo testing are both regulated in India, and only registered clinics may offer them. What is available depends on the clinic, the laboratory and the stage of pregnancy. Your counsellor and the fertility clinic will explain what applies to you before you commit to anything.
Who this does not apply to
If neither partner carries a confirmed VHL fault, none of these options applies. A relative's VHL diagnosis does not by itself mean you carry it. Get your own result first, through a counsellor, before making any plans around it. If you test negative for the family's fault, your children cannot inherit it from you.
If you are planning a pregnancy and are unsure where to begin, call the helpline and describe what you know.Commonly believed
Four things couples tell us, and what is actually true
"Our first child is clear, so the next one will be too."
Each pregnancy is a fresh coin toss. One child's result says nothing about the next, which is why every child is tested separately.
"Only a mother can pass VHL on."
A father passes it on in exactly the same way. His children have the same one in two chance, whether they are sons or daughters.
"A woman with VHL should not get pregnant."
Many women with VHL have safe pregnancies. What they need is planning: checks before conceiving and closer care during pregnancy. Some studies suggest growths may enlarge in pregnancy, though these studies are small. The one thing that must never be missed is a phaeochromocytoma.
"Embryo testing always leads to a baby."
It does not. IVF may take more than one attempt, some rounds produce no suitable embryo, and success depends heavily on the woman's age. Ask any clinic for its own results before you begin.
Questions we are asked
Common questions about VHL and having children
What is the chance our child will inherit VHL?
One in two for each pregnancy, if one parent carries the fault. Sons and daughters are equally likely to inherit it. The chance does not change with birth order or with how many children in the family already carry it.
Can VHL skip a generation?
The fault does not skip. What can look like skipping is a parent whose growths were mild, found late or never diagnosed. That is why a counsellor asks about eye problems, kidney tumours and early strokes on both sides of the family.
Is pregnancy safe for a woman with VHL?
For most women, yes, with planning. The key steps are an adrenal hormone test before and during pregnancy, continued eye checks and a clear plan for delivery. Tell the obstetrician about VHL at the first visit, and keep the VHL team informed throughout.
Does VHL affect fertility?
It does not usually affect a woman's fertility. Men with VHL often have small cysts in the tubes behind the testes. These are usually harmless, but when both sides are affected they can occasionally reduce fertility. A semen test can check this if you are worried.
How expensive is embryo testing?
It is costly, because it combines IVF with a genetic test built around your family's exact fault, and more than one cycle may be needed. Ask each clinic for a full written estimate that includes the test design, the IVF itself and any repeat attempts.
When can our baby be tested?
Soon after birth, or in early childhood, from a small blood sample, once the family fault is known. The result decides whether the child needs the eye checks that begin in the first year and the scans that follow later.
Do we have to tell the other family before a marriage?
It is a personal decision, and no law requires it. Many families find it easier when the result is shared honestly and early, with a counsellor present to explain what it means. Hidden results tend to surface later, often at a harder time.
Where do we start?
Book genetic counselling as a couple, bringing any VHL reports from the family. The counsellor will confirm the fault, explain each option and refer you onwards if needed. Call the CION helpline if you are not sure who to approach.
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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Sources
- GeneReviews (NCBI) — Von Hippel-Lindau Syndrome
- MedlinePlus Genetics — Von Hippel-Lindau syndrome
- MedlinePlus Genetics — What are the different ways a genetic condition can be inherited?
- 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
Testing the family for VHLWho is tested first, and in what orderPreimplantation genetic testing explainedHow embryo testing works, step by stepPrenatal diagnosis for a known family variantTesting during pregnancy, and what it involvesVHL surveillance from childhood onwardsThe checks a child who carries the fault will need
Talk to us
Planning a family and not sure where to start?
Tell us what you know about the VHL result in your family. We will arrange genetic counselling for you as a couple and explain your options without any pressure. One helpline serves every CION centre.