Overview
Paramedian nasal cleft is an extremely rare birth defect where there is an abnormal groove or split (cleft) along the side of the nose, running parallel to the midline but not exactly in the center. This condition is present at birth and results from incomplete fusion of the tissues that form the nose during early development in the womb. The cleft can vary in severity, ranging from a small notch or groove on the surface of the nose to a deeper split that may involve the underlying cartilage and bone. In some cases, it may be associated with other facial abnormalities or developmental differences. Because this condition is so rare, it is classified under broader categories of congenital malformations of the face and neck. The appearance of the nose may be noticeably different, which can affect a child's self-esteem and social interactions as they grow. Some cases may also involve breathing difficulties if the nasal passages are affected. Treatment is primarily surgical. Reconstructive surgery can help restore a more typical appearance to the nose and improve any functional problems such as breathing difficulties. The timing and complexity of surgery depend on the severity of the cleft and whether other structures are involved. A team of specialists, including plastic surgeons and ear-nose-throat doctors, typically manages care. With appropriate surgical intervention, outcomes are generally favorable, though multiple procedures may be needed as the child grows.
Also known as:
Key symptoms:
Visible groove or split along the side of the noseAbnormal shape of the noseAsymmetry of the nosePossible breathing difficulties through the noseSkin indentation or notch on the nosePossible involvement of nasal cartilagePossible widening of the nasal bridgeCosmetic differences in facial appearancePossible associated facial abnormalities
Variable
Can be inherited in different ways depending on the underlying gene
Neonatal
Begins at or shortly after birth (first 4 weeks)
Treatments
No FDA-approved treatments are currently listed for Paramedian nasal cleft.
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Specialists
View all specialists →No specialists are currently listed for Paramedian nasal cleft.
Treatment Centers
8 centersBaylor College of Medicine Rare Disease Center ↗
Baylor College of Medicine
📍 Houston, TX
🏥 NORDStanford Medicine Rare Disease Center ↗
Stanford Medicine
📍 Stanford, CA
🔬 UDNNIH Clinical Center Undiagnosed Diseases Program ↗
National Institutes of Health
📍 Bethesda, MD
🔬 UDNUCLA UDN Clinical Site ↗
UCLA Health
📍 Los Angeles, CA
🔬 UDNBaylor College of Medicine UDN Clinical Site ↗
Baylor College of Medicine
📍 Houston, TX
🔬 UDNHarvard/MGH UDN Clinical Site ↗
Massachusetts General Hospital
📍 Boston, MA
🏥 NORDMayo Clinic Center for Individualized Medicine ↗
Mayo Clinic
📍 Rochester, MN
👤 Mayo Clinic Center for Individualized Medicine
🏥 NORDUCLA Rare Disease Day Program ↗
UCLA Health
📍 Los Angeles, CA
Travel Grants
No travel grants are currently matched to Paramedian nasal cleft.
Community
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Caregiver Resources
NORD Caregiver Resources
Support, advocacy, and financial assistance for caregivers of rare disease patients.
Mental Health Support
Rare disease caregiving can be isolating. Connect with counseling and peer support.
Family & Caregiver Grants
Financial assistance programs specifically for caregivers of rare disease patients.
Social Security Disability
Learn how rare disease patients may qualify for SSDI/SSI benefits.
Questions for your doctor
Bring these to your next appointment
- Q1.How severe is my child's nasal cleft, and what structures are involved?,Is this cleft part of a broader genetic syndrome, and should we pursue genetic testing?,When is the best time to perform reconstructive surgery?,How many surgeries might my child need as they grow?,Will my child have any long-term breathing problems?,Are there any specialists we should see in addition to the surgeon?,What support is available for emotional and social challenges related to facial differences?
Common questions about Paramedian nasal cleft
What is Paramedian nasal cleft?
Paramedian nasal cleft is an extremely rare birth defect where there is an abnormal groove or split (cleft) along the side of the nose, running parallel to the midline but not exactly in the center. This condition is present at birth and results from incomplete fusion of the tissues that form the nose during early development in the womb. The cleft can vary in severity, ranging from a small notch or groove on the surface of the nose to a deeper split that may involve the underlying cartilage and bone. In some cases, it may be associated with other facial abnormalities or developmental differen
At what age does Paramedian nasal cleft typically begin?
Typical onset of Paramedian nasal cleft is neonatal. Age of onset can vary across affected individuals.