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CION Cancer Clinics
Beckwith-Wiedemann syndrome: which tumours to watch for, and how | CION Cancer Clinics
Beckwith-Wiedemann syndrome (BWS) is an overgrowth condition that raises a young child's chance of certain tumours, mainly Wilms tumour of the kidney and hepatoblastoma of the liver. Most children with BWS never develop a tumour. The raised risk sits in early childhood, and regular tummy ultrasound scans are used to find a tumour early. How much screening a child needs depends on what caused their BWS. 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
- What is Beckwith-Wiedemann syndrome, and why does it affect tumour risk?
- Why the cause of BWS changes how much screening a child needs
- What does tumour screening usually look like for a child with BWS?
- The words you will meet, in plain language
- Four things parents tell us about BWS, and what is true
- What this page cannot tell you
- Common questions about BWS and tumour screening
The short answer
What is Beckwith-Wiedemann syndrome, and why does it affect tumour risk?
Beckwith-Wiedemann syndrome (BWS) is an overgrowth condition present from birth. It happens when growth-control genes in one small region of chromosome 11 are switched on or off in the wrong way. Those same genes help restrain cell growth in the kidneys and liver, which is why some children with BWS develop Wilms tumour or hepatoblastoma, a liver tumour of early childhood.
Signs that lead doctors to think of BWS
Children with BWS may be large at birth or grow faster than expected. Other signs include a large tongue, a gap in the tummy wall at the navel, one side of the body being larger than the other, creases or pits on the ear lobes, and low blood sugar in the first days of life. Not every child has all of them, and some have only one or two.
Why the risk is concentrated in early childhood
The tumours linked to BWS arise from cells that are still developing. Once the kidneys and liver have finished growing, that window largely closes. This is why screening is focused on the first years of life and usually stops before the teenage years.
Most children with BWS never develop a tumour. Screening is a safety net, not a prediction.Not one condition, several
Why the cause of BWS changes how much screening a child needs
A blood or tissue test can usually show which of several changes caused a child's BWS. Each carries a different level of tumour risk.
Loss of a chemical tag at IC2
The most common cause. The tumour risk is lower than in other groups, and Wilms tumour is uncommon. Some guidelines screen these children less intensively, and practice differs between countries.
Extra chemical tag at IC1
Less common, but carries the highest chance of Wilms tumour among the BWS groups. These children are routinely offered regular kidney ultrasound scans.
Two copies from the father
Called paternal uniparental disomy. Some cells carry both copies of the region from the father and none from the mother. The chance of both Wilms tumour and hepatoblastoma is raised.
A CDKN1C gene fault
A true gene fault that can run in families, usually passed on through the mother. Wilms tumour is less of a concern here. A tumour of the nerve tissue called neuroblastoma has been reported instead.
What this means for relatives
- Other children may be at risk
- Parents may be offered testing
Not sure whether this applies to you?
Ask an oncologistFrom diagnosis to school age
What does tumour screening usually look like for a child with BWS?
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The diagnosis is confirmed and the cause tested
A paediatrician or clinical geneticist confirms the signs, and a specialist test looks at the chromosome 11 region. Sometimes the blood test is normal and a skin or tissue sample is needed.
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The family meets the counsellor
The counsellor explains the cause, what it means for tumour risk and whether brothers, sisters or future children could be affected.
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Regular tummy ultrasound scans begin
For children who need screening, many centres scan the kidneys and liver roughly every three months. The scan is quick, painless and uses no radiation.
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A blood test for the liver may be added
Some centres also check a blood marker called alpha-fetoprotein in the early years, to look for hepatoblastoma. Others do not, and guidelines differ.
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Screening winds down around school age
Scans usually stop once the child is around seven or eight, when the risk has fallen close to that of other children. Growth and development checks continue.
!
Do not wait for the next scan
If you notice a new lump or swelling in your child's tummy, pink or red urine, or your child seems unwell with tummy pain, see your child's doctor the same day. Say that the child has BWS. A tumour can grow between scheduled scans, and a parent's hand on the tummy often finds it first. Do not press on or massage a lump you have found.
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On your child's report
The words you will meet, in plain language
- Imprinting
- A process where a gene is switched on or off depending on which parent it came from. BWS is a disorder of this switching.
- Methylation
- The chemical tag that sets a gene's on or off switch. BWS tests measure whether too much or too little tag is present.
- Uniparental disomy
- Both copies of a chromosome region come from one parent instead of one from each.
- Wilms tumour
- A kidney cancer of young children. Found early, it usually responds well to treatment.
- Hepatoblastoma
- A rare liver tumour of babies and toddlers.
- Lateralised overgrowth
- One side of the body, or one limb, growing larger than the other. It is sometimes the only sign of BWS.
Commonly believed
Four things parents tell us about BWS, and what is true
"My child has BWS, so a tumour is coming."
Most children with BWS never develop a tumour. Screening is offered because the risk is raised, and because tumours found small are easier to treat.
"Something we did in pregnancy caused this."
Nothing a parent did causes BWS. Most cases arise by chance around the time of conception. Some studies suggest a small link with assisted conception, but it is not something parents could have prevented.
"The scans are normal, so we can stop early."
A normal scan only covers that day. The benefit comes from keeping to the schedule through the high-risk years, so a tumour that appears later is still found small.
"Our other children will have BWS too."
For most causes, the chance of a brother or sister being affected is low. It is higher when a CDKN1C fault or a chromosome change runs in the family, which testing can check.
Being straight with you
What this page cannot tell you
It cannot tell you your child's own tumour risk, or exactly how often they should be scanned. That depends on the cause of their BWS, their signs and how your team weighs the guidelines. What your child's test result means is a question for the counsellor or geneticist who ordered it.
Where the evidence is thin
Guidelines from North America and Europe differ on some points, such as whether the lowest-risk group needs scans at all and whether the liver blood test helps. Both are based on fairly small groups of children. There is little published data on BWS in Indian children.
Who this does not apply to
A baby who is simply large at birth, with no other signs, usually does not have BWS. Adults with BWS, and older children past the screening years, do not need tummy scans for Wilms tumour. If your child has one side larger than the other, ask your paediatrician whether BWS testing is worth considering.
Questions we are asked
Common questions about BWS and tumour screening
Why ultrasound and not CT or MRI?
Ultrasound uses no radiation, needs no sedation and can be repeated often. It shows the kidneys and liver well in young children. CT and MRI are kept for checking something the ultrasound has found.
Does my child need to be sedated for the scan?
No. A tummy ultrasound only needs the child to lie reasonably still for a few minutes. Holding them, feeding a baby or bringing a favourite toy usually helps. You can stay with your child throughout.
What happens if the scan finds something?
Most findings turn out to be harmless, such as a cyst or an enlarged kidney, which is common in BWS. If a solid lump is seen, the child is referred quickly to a paediatric cancer team for further scans.
Can BWS be tested before birth?
Sometimes. Signs may be seen on a pregnancy scan, and testing is possible if the family cause is known. Whether it is useful depends on the cause, so discuss it with a genetic counsellor before a future pregnancy.
Will my child's large tongue or overgrowth need treatment?
Some children need help with feeding, breathing or speech, and a few have surgery to reduce the tongue. Overgrowth often slows with age. These issues are managed by the paediatric team, separately from tumour screening.
Can the scans be done near our home in the district?
Often, yes. What matters is a reliable scan at the right interval by someone used to scanning children. Bring every previous report to each visit, so any change can be compared. Tell the sonographer the child has BWS.
If a tumour is found, is it treatable?
Wilms tumour and hepatoblastoma found early usually respond well to treatment. Screening aims to find them at that stage. Children with BWS may need kidney-sparing surgery, since a tumour could appear on the other side later.
Who should we see first?
Start with your paediatrician, who can refer you to a clinical geneticist for confirmation and testing. A paediatric oncologist can plan tumour screening. Call the CION helpline if you are not sure where to begin.
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 Bookshelf) — Beckwith-Wiedemann Syndrome
- MedlinePlus Genetics — Beckwith-Wiedemann syndrome
- MedlinePlus Genetics — CDKN1C gene
- National Cancer Institute — Wilms Tumor and Other Childhood Kidney Tumors Treatment (PDQ) - Patient Version
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
Abdominal ultrasound screening in predisposed childrenWhat happens at each tummy scanSurveillance for Wilms tumour gene carriersHow often scans run, and when they stopWilms tumour genes: which cancers and what riskHow BWS compares with WT1 and other causesTesting the family for Wilms tumour genesWhether brothers and sisters need testing
Talk to us
Is your child due to start BWS tumour screening?
We can help you understand your child's test result and plan scans that fit your family's travel. One helpline serves every CION centre.