Frontonasal Dysplasia: Causes, Symptoms, and Treatment
Medically reviewed by Harsha Moole, MD, Internal Medicine. Last reviewed: October 2, 2026.
What kind of doctor treats Frontonasal Dysplasia?
An otolaryngologist, also called an ENT doctor, treats problems of the ear, nose, and throat and often helps care for children with frontonasal dysplasia. A plastic surgeon, a geneticist, an eye doctor, and a hearing specialist may also join the team. A primary care doctor usually helps coordinate care.
What it is
Frontonasal dysplasia is a rare condition that a baby is born with. It affects the way the middle of the face forms before birth, leaving a gap or unusual shape in the area around the nose and forehead. Doctors sometimes call it frontonasal dysmorphism, which means a difference in the structure of the face.
The condition happens while the baby is growing in the womb, when tissues that normally join in the center of the face do not join the usual way. This leaves visible differences in the nose, the space between the eyes, and sometimes the forehead.
Symptoms
The signs show up at birth. A baby with frontonasal dysplasia may have a wide space between the eyes, called hypertelorism. The nose may look broad, flat, or split down the middle. Some babies have a small opening in the skin near the nose.
Causes and who gets it
In many cases, the exact cause is not known. Some cases are linked to gene changes, a few of which can run in families. Most cases happen for the first time in a family with no history of the condition.
How doctors diagnose it
Doctors usually diagnose frontonasal dysplasia by examining the baby's face at birth. Imaging tests such as X-rays, CT scans, or MRI can show the facial bones and tissues in more detail. Genetic testing may help rule out similar conditions.
Treatment
Treatment depends on which features the child has. Surgery is often used to repair the nose and bring the eyes closer together, and doctors may plan more than one surgery as the face grows. Hearing support, eye care, and speech therapy may be needed.
When to see a doctor
The facial features are usually noticed at birth. A child should see a doctor for problems with breathing, feeding, hearing, or speech. Regular checkups matter because related problems, such as hearing loss, can appear as the child grows.
How a direct primary care or concierge doctor fits in
A direct primary care doctor charges a flat monthly fee instead of billing insurance, while a concierge doctor usually charges more and often works with insurance. Either one can be a steady home base for a child with frontonasal dysplasia, handling routine checkups and common problems like ear infections, and referring the family to a specialist when surgery or specialized testing is needed.
Common questions
Does frontonasal dysplasia affect intelligence?
Most children with frontonasal dysplasia have normal intelligence. The condition mainly affects the face. Some children may have other findings, so doctors check each child carefully.
Can it be seen before birth?
Sometimes. An ultrasound during pregnancy can show facial differences in some cases. A clear diagnosis often waits until after birth.
Will my child need more than one surgery?
Many children need more than one procedure. Doctors often stage repairs as the face grows. The exact plan depends on the child's features.
Is it inherited?
Some cases run in families due to changed genes, but many cases appear with no family history. A geneticist can help explain the chance of it happening again in a family.
Sources
- NIH Genetic and Rare Diseases Information Center - Frontonasal dysplasia
- MedlinePlus - Frontonasal dysplasia
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.
