Van Der Woude Syndrome: Causes, Symptoms, and Treatment
Medically reviewed by Harsha Moole, MD, Internal Medicine. Last reviewed: October 2, 2026.
What kind of doctor treats Van Der Woude Syndrome?
A primary care doctor often notices the signs and coordinates care. Treatment usually involves a team: a plastic surgeon or cleft palate team for surgery, a dentist or orthodontist for teeth, a speech therapist when needed, and a geneticist to confirm the diagnosis.
What it is
Van der Woude syndrome is a rare condition people are born with, passed down through genes. It mainly affects the mouth and face. Most people with it have a cleft lip or palate, or small pits near the middle of the lower lip. Some have only the pits, some only a cleft, and some both.
Symptoms
The signs can differ a lot from one person to the next, even within the same family. Lip pits may release saliva, especially when a person eats. Some people also have missing, extra, or late-arriving teeth, or a jaw that sits further back than usual.
Causes and who gets it
The condition happens when there is a change, called a mutation, in a gene called IRF6, which helps the face and mouth form properly before birth. It follows autosomal dominant inheritance: a child needs only one changed copy from one parent. It affects about 1 in 35,000 to 100,000 babies, and boys and girls equally.
How doctors diagnose it
Doctors often suspect it based on physical signs, such as lip pits together with a cleft, and ask about family history. A genetic test on a blood or saliva sample can confirm the diagnosis and help with family planning.
Treatment
Care focuses on each person's features. Cleft lips and palates are usually repaired with surgery in the first year or two of life. Lip pits are sometimes removed if they leak saliva. Dentists or orthodontists handle dental issues, and some children need feeding help or speech therapy.
When to see a doctor
A baby born with a cleft lip, cleft palate, or unusual lower lip pits should be seen soon after birth. Early care helps with feeding and sets up a plan for surgery. Lip pits with pain, swelling, or repeated drainage should be checked.
How a direct primary care or concierge doctor fits in
A direct primary care doctor charges a flat monthly fee instead of billing insurance; a concierge doctor usually charges more and often works alongside insurance. Either can be a steady home base, watching growth and development and coordinating referrals to specialists.
Common questions
Is van der Woude syndrome dangerous?
For most people, it is not dangerous. The main effects are on the lip, mouth, and teeth. Surgery and dental care address most of the problems, though each person's experience is different.
Can it be prevented?
No. The gene change that causes the condition happens before birth and cannot be prevented. Genetic testing and counseling can help families understand the chance of passing it on.
Will my child look like me if we both have it?
Not necessarily. The features vary widely, even within one family. A parent and child may have very different signs. For example, one may have only lip pits and the other a cleft.
Do the lip pits need to be removed?
Not always. Many people keep their lip pits without any trouble. Doctors may suggest removal if the pits leak saliva often or get infected.
Sources
- MedlinePlus Genetics - Van der Woude syndrome
- NIH Genetic and Rare Diseases Information Center - Van der Woude syndrome
Medical Disclaimer
This content is for general educational and informational purposes only and is not medical advice. It is not a substitute for professional medical advice, diagnosis, or treatment, and reading it does not create a doctor-patient relationship. Always seek the advice of your physician or another qualified health provider with any questions about a medical condition, and never disregard or delay seeking professional advice because of something you read here. If you think you may have a medical emergency, call 911 (or your local emergency number) immediately.
