Overview
A rare congenital anomaly of the ventricular septum is a birth defect affecting the wall (septum) that separates the two lower pumping chambers of the heart (the ventricles). This wall is important because it keeps oxygen-rich blood on the left side of the heart separate from oxygen-poor blood on the right side. When there is an unusual or rare structural problem with this wall — beyond the more common ventricular septal defect (VSD) — it can disrupt normal blood flow through the heart and body. These rare anomalies may include unusual shapes, positions, or combinations of defects that are not seen in typical heart conditions. Because the heart cannot pump blood as efficiently, the body may not get enough oxygen. This can cause symptoms like rapid breathing, poor feeding in babies, slow weight gain, and tiredness. In more serious cases, the heart has to work harder than normal, which can lead to heart failure over time. Treatment depends on the specific type and severity of the defect. Some children may need heart surgery or a catheter-based procedure to repair or close the abnormal opening. Others may be managed with medications to support heart function. With early diagnosis and appropriate care, many children with these conditions can live full and active lives, though some may need lifelong follow-up with a heart specialist.
Also known as:
Key symptoms:
Fast or labored breathingPoor feeding or difficulty eating in infantsSlow weight gain or failure to thriveUnusual tiredness or low energyBluish tint to the lips or skin (cyanosis)Heart murmur heard by a doctorSweating during feedingSwollen legs, ankles, or bellyFrequent respiratory infectionsRapid heartbeat
Multifactorial
Caused by a mix of several genes and environmental factors
Neonatal
Begins at or shortly after birth (first 4 weeks)
FDA & Trial Timeline
5 eventsSeattle Children's Hospital — NA
Xinhua Hospital, Shanghai Jiao Tong University School of Medicine
Fondation Hôpital Saint-Joseph
Sohag University
French Cardiology Society
Data sourced from FDA regulatory filings and ClinicalTrials.gov. Updated periodically.
Treatments
No FDA-approved treatments are currently listed for Rare congenital anomaly of ventricular septum.
1 clinical trialare actively recruiting — trials can provide access to cutting-edge therapies.
View clinical trials →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 Rare congenital anomaly of ventricular septum.
Community
No community posts yet. Be the first to share your experience with Rare congenital anomaly of ventricular septum.
Start the conversation →Latest news about Rare congenital anomaly of ventricular septum
Disease timeline:
New recruiting trial: Clinical Evaluation Of Ventricular Septal Defect (VSD) In Children at Sohag Univesity Hospital
A new clinical trial is recruiting patients for Rare congenital anomaly of ventricular septum
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.What is the exact type of ventricular septal anomaly my child has, and how does it affect their heart?,Does my child need surgery or a procedure now, or can we watch and wait?,What symptoms should prompt me to call you or go to the emergency room?,Will my child need lifelong follow-up, and what does that look like as they grow up?,Should my child have genetic testing to look for an underlying syndrome?,Are there any activity restrictions my child needs to follow?,What is the long-term outlook for my child with this specific defect?
Common questions about Rare congenital anomaly of ventricular septum
What is Rare congenital anomaly of ventricular septum?
A rare congenital anomaly of the ventricular septum is a birth defect affecting the wall (septum) that separates the two lower pumping chambers of the heart (the ventricles). This wall is important because it keeps oxygen-rich blood on the left side of the heart separate from oxygen-poor blood on the right side. When there is an unusual or rare structural problem with this wall — beyond the more common ventricular septal defect (VSD) — it can disrupt normal blood flow through the heart and body. These rare anomalies may include unusual shapes, positions, or combinations of defects that are not
How is Rare congenital anomaly of ventricular septum inherited?
Rare congenital anomaly of ventricular septum follows a multifactorial inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.
At what age does Rare congenital anomaly of ventricular septum typically begin?
Typical onset of Rare congenital anomaly of ventricular septum is neonatal. Age of onset can vary across affected individuals.
Are there clinical trials for Rare congenital anomaly of ventricular septum?
Yes — 1 recruiting clinical trial is currently listed for Rare congenital anomaly of ventricular septum on UniteRare. See the clinical trials section on this page for phase, sponsor, and site details sourced from ClinicalTrials.gov.
Which specialists treat Rare congenital anomaly of ventricular septum?
8 specialists and care centers treating Rare congenital anomaly of ventricular septum are listed on UniteRare, sourced from ClinicalTrials.gov principal investigators, published research, and the NPPES NPI registry.