Overview
Fallot complex-intellectual disability-growth delay syndrome is an extremely rare genetic condition that combines a heart defect known as tetralogy of Fallot with intellectual disability and slower-than-expected physical growth. Tetralogy of Fallot is a combination of four heart problems present at birth: a hole between the lower chambers of the heart (ventricular septal defect), narrowing of the passage from the heart to the lungs (pulmonary stenosis), an aorta that sits over the ventricular septal defect, and thickening of the right side of the heart. Children with this syndrome typically show delays in reaching developmental milestones such as sitting, walking, and talking. Growth delay means that affected children are shorter and may weigh less than expected for their age. Some individuals may also have distinctive facial features or other minor physical differences. Because this syndrome affects multiple body systems, care usually involves a team of specialists. Treatment focuses on managing the heart defect, often through surgery, and providing developmental support through therapies such as speech therapy, occupational therapy, and special education services. The long-term outlook depends largely on the severity of the heart defect and the degree of intellectual disability. This condition is sometimes referred to by its Orphanet designation (ORPHA:3304) and may also be found under the broader category of syndromic tetralogy of Fallot.
Also known as:
Key symptoms:
Heart defect (tetralogy of Fallot)Intellectual disabilitySlower physical growth than expectedShort statureDelayed developmental milestonesBluish skin color due to low oxygen (cyanosis)Difficulty feeding in infancyLow birth weightSpeech and language delaysLearning difficultiesPossible distinctive facial featuresShortness of breath or rapid breathingPoor weight gain
Clinical phenotype terms (33)— hover any for plain English
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 Fallot complex-intellectual disability-growth delay syndrome.
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Specialists
View all specialists →No specialists are currently listed for Fallot complex-intellectual disability-growth delay 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 Fallot complex-intellectual disability-growth delay syndrome.
Community
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Caregiver Resources
NORD Caregiver Resources
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Mental Health Support
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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 heart defect, and when will surgery be needed?,What genetic testing should be done to look for the cause of this syndrome?,What developmental therapies should we start, and how soon?,Are there any activity restrictions my child should follow?,What signs of a medical emergency should I watch for at home?,How often will my child need follow-up with a cardiologist after surgery?,What educational support and resources are available for children with intellectual disability?
Common questions about Fallot complex-intellectual disability-growth delay syndrome
What is Fallot complex-intellectual disability-growth delay syndrome?
Fallot complex-intellectual disability-growth delay syndrome is an extremely rare genetic condition that combines a heart defect known as tetralogy of Fallot with intellectual disability and slower-than-expected physical growth. Tetralogy of Fallot is a combination of four heart problems present at birth: a hole between the lower chambers of the heart (ventricular septal defect), narrowing of the passage from the heart to the lungs (pulmonary stenosis), an aorta that sits over the ventricular septal defect, and thickening of the right side of the heart. Children with this syndrome typically sh
At what age does Fallot complex-intellectual disability-growth delay syndrome typically begin?
Typical onset of Fallot complex-intellectual disability-growth delay syndrome is neonatal. Age of onset can vary across affected individuals.