Overview
Schisis association is a rare condition present from birth where a baby is born with multiple openings or splits in different parts of the body. The word 'schisis' comes from the Greek word for splitting or cleft. This condition is also sometimes called 'schisis association' or referred to in the context of midline defects. It typically involves a combination of cleft lip, cleft palate, omphalocele (where abdominal organs push through the belly button area), neural tube defects (problems with the spine or brain covering), and diaphragmatic hernia (a hole in the muscle that separates the chest from the abdomen). These defects happen together more often than would be expected by chance, which is why doctors group them as an 'association.' The exact cause of schisis association is not fully understood. It is thought to involve problems during very early fetal development, when the body's tissues are closing and forming properly. Both genetic and environmental factors may play a role. Babies born with this condition often need surgery shortly after birth to repair the physical openings. The number and severity of defects varies widely from one child to another, which means the impact on health and development can range from mild to very serious. Early diagnosis and a team of specialists working together give the best chance for a good outcome.
Key symptoms:
Cleft lip (a split or opening in the upper lip)Cleft palate (a split in the roof of the mouth)Omphalocele (abdominal organs protruding through the belly button area at birth)Neural tube defects such as spina bifida (incomplete closure of the spine)Diaphragmatic hernia (a hole in the diaphragm allowing abdominal organs into the chest)Breathing difficulties due to chest or diaphragm problemsFeeding difficulties related to cleft lip or palateAbdominal wall defectsPossible brain or spinal cord abnormalities
Clinical phenotype terms (15)— hover any for plain English
Multifactorial
Caused by a mix of several genes and environmental factors
Neonatal
Begins at or shortly after birth (first 4 weeks)
Treatments
No FDA-approved treatments are currently listed for Schisis association.
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Specialists
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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 Schisis association.
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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.Which specific defects does my child have, and how severe are they?,What surgeries will my child need, and in what order should they happen?,Should we do genetic testing, and what might it tell us about the cause and recurrence risk?,What developmental delays should I watch for, and when should we start therapy?,How will we coordinate care between all the different specialists my child needs?,What is the long-term outlook for my child given their specific combination of defects?,Are there support groups or resources for families dealing with schisis association?
Common questions about Schisis association
What is Schisis association?
Schisis association is a rare condition present from birth where a baby is born with multiple openings or splits in different parts of the body. The word 'schisis' comes from the Greek word for splitting or cleft. This condition is also sometimes called 'schisis association' or referred to in the context of midline defects. It typically involves a combination of cleft lip, cleft palate, omphalocele (where abdominal organs push through the belly button area), neural tube defects (problems with the spine or brain covering), and diaphragmatic hernia (a hole in the muscle that separates the chest
How is Schisis association inherited?
Schisis association follows a multifactorial inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.
At what age does Schisis association typically begin?
Typical onset of Schisis association is neonatal. Age of onset can vary across affected individuals.