Overview
Syngnathia-cleft palate syndrome is an extremely rare birth defect that involves two main problems in the mouth and jaw area. The first is syngnathia, which means the upper and lower jaws are fused or joined together in an abnormal way. This fusion can be caused by bony connections (bony syngnathia) or by bands of soft tissue (fibrous syngnathia) linking the jaws. The second feature is a cleft palate, which is an opening or split in the roof of the mouth. Together, these problems can make it very difficult for a newborn to open their mouth, feed, and breathe properly. Because the jaw fusion restricts mouth opening, affected babies may face life-threatening breathing difficulties shortly after birth and require urgent medical attention. The condition is present at birth and is typically noticed immediately in the newborn period. Treatment usually involves surgery to separate the fused jaws and repair the cleft palate. The timing and complexity of surgery depend on how severe the fusion is and whether the baby can breathe and feed safely. A team of specialists including craniofacial surgeons, ear-nose-throat doctors, and feeding specialists is usually needed. Because so few cases have been reported in the medical literature, much about this condition — including its exact cause — remains poorly understood. Early intervention is critical to ensure the baby can breathe, eat, and develop as normally as possible.
Key symptoms:
Jaws fused together at birthInability or difficulty opening the mouthCleft palate (opening in the roof of the mouth)Breathing difficulties at birthFeeding difficulties in newbornsRestricted jaw movementNasal breathing problemsPoor weight gain due to feeding issuesPossible dental abnormalitiesSpeech difficulties later in life if untreated
Sporadic
Usually appears on its own, not inherited from a parent
Neonatal
Begins at or shortly after birth (first 4 weeks)
Treatments
No FDA-approved treatments are currently listed for Syngnathia-cleft palate syndrome.
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Specialists
View all specialists →No specialists are currently listed for Syngnathia-cleft palate syndrome.
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 Syngnathia-cleft palate syndrome.
Community
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Caregiver Resources
NORD Caregiver Resources
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Family & Caregiver Grants
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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 the jaw fusion, and is it bony or soft tissue?,What is the plan for securing my baby's airway safely?,When will surgery to separate the jaws be performed?,What is the timeline for cleft palate repair?,What are the risks of the jaws fusing again after surgery?,Should we pursue genetic testing to understand the cause?,What long-term follow-up will my child need for jaw growth, speech, and dental health?
Common questions about Syngnathia-cleft palate syndrome
What is Syngnathia-cleft palate syndrome?
Syngnathia-cleft palate syndrome is an extremely rare birth defect that involves two main problems in the mouth and jaw area. The first is syngnathia, which means the upper and lower jaws are fused or joined together in an abnormal way. This fusion can be caused by bony connections (bony syngnathia) or by bands of soft tissue (fibrous syngnathia) linking the jaws. The second feature is a cleft palate, which is an opening or split in the roof of the mouth. Together, these problems can make it very difficult for a newborn to open their mouth, feed, and breathe properly. Because the jaw fusion re
How is Syngnathia-cleft palate syndrome inherited?
Syngnathia-cleft palate syndrome follows a sporadic inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.
At what age does Syngnathia-cleft palate syndrome typically begin?
Typical onset of Syngnathia-cleft palate syndrome is neonatal. Age of onset can vary across affected individuals.