Mitral atresia

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1Active trials1Specialists8Treatment centers

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Overview

Mitral atresia is a rare and serious heart defect that a baby is born with. In this condition, the mitral valve — the valve that normally allows blood to flow from the upper left chamber of the heart to the lower left chamber — is completely absent or severely underdeveloped. Because blood cannot pass through this valve, the normal flow of blood through the heart is blocked. This forces the heart to find alternative pathways to keep blood moving, which puts enormous strain on the heart and lungs. Babies with mitral atresia often have other heart defects at the same time, such as a hole between the upper chambers of the heart (called an atrial septal defect), a small or underdeveloped left ventricle, or problems with the aorta. Together, these defects are sometimes grouped under the broader term 'hypoplastic left heart syndrome' or other complex congenital heart disease categories, depending on the exact anatomy. Symptoms appear very soon after birth and include bluish skin color (cyanosis), rapid or difficult breathing, poor feeding, and signs of heart failure. Without treatment, this condition is life-threatening in the newborn period. Treatment involves a series of open-heart surgeries, and in some cases, heart transplantation. With advances in pediatric cardiac surgery, many children with mitral atresia can survive into childhood and beyond, though they require lifelong specialized cardiac care.

Key symptoms:

Bluish or grayish skin color, especially around the lips and fingernails (cyanosis)Very fast or labored breathingDifficulty feeding or tiring quickly during feedingPoor weight gain in infancySwelling in the legs, abdomen, or around the eyesExtreme tiredness or low energyPale or mottled skinRapid or irregular heartbeatCool or clammy skinFainting or loss of consciousness

Inheritance

Multifactorial

Caused by a mix of several genes and environmental factors

Age of Onset

Neonatal

Begins at or shortly after birth (first 4 weeks)

Orphanet ↗NORD ↗

FDA & Trial Timeline

1 event
Jul 2020Two-Year Study of the Safety and Efficacy of the Second-Generation Tissue Engineered Vascular Grafts

Nationwide Children's Hospital — PHASE2

TrialRECRUITING

Data sourced from FDA regulatory filings and ClinicalTrials.gov. Updated periodically.

Treatments

No FDA-approved treatments are currently listed for Mitral atresia.

1 clinical trialare actively recruiting — trials can provide access to cutting-edge therapies.

View clinical trials →

Clinical Trials

1 recruitingView all trials with filters →
Phase 21 trial
Two-Year Study of the Safety and Efficacy of the Second-Generation Tissue Engineered Vascular Grafts
Phase 2
Actively Recruiting
PI: Christopher Breuer, MD (Nationwide Children's Hospital) · Sites: Columbus, Ohio

Specialists

1 foundView all specialists →
MM
Mark Galantowicz, MD
COLUMBUS, OH
Specialist
PI on 1 active trial

Treatment Centers

8 centers
🏥 NORD

Baylor College of Medicine Rare Disease Center

Baylor College of Medicine

📍 Houston, TX

🏥 NORD

Stanford Medicine Rare Disease Center

Stanford Medicine

📍 Stanford, CA

🔬 UDN

NIH Clinical Center Undiagnosed Diseases Program

National Institutes of Health

📍 Bethesda, MD

🔬 UDN

UCLA UDN Clinical Site

UCLA Health

📍 Los Angeles, CA

🔬 UDN

Baylor College of Medicine UDN Clinical Site

Baylor College of Medicine

📍 Houston, TX

🔬 UDN

Harvard/MGH UDN Clinical Site

Massachusetts General Hospital

📍 Boston, MA

🏥 NORD

Mayo Clinic Center for Individualized Medicine

Mayo Clinic

📍 Rochester, MN

👤 Mayo Clinic Center for Individualized Medicine

🏥 NORD

UCLA Rare Disease Day Program

UCLA Health

📍 Los Angeles, CA

Travel Grants

No travel grants are currently matched to Mitral atresia.

Search all travel grants →NORD Financial Assistance ↗

Community

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Latest news about Mitral atresia

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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.What is the exact anatomy of my child's heart defect, and how does it affect the surgical plan?,What is the recommended surgical pathway for my child, and what are the risks of each operation?,What signs should I watch for at home that mean I need to call for emergency help?,Will my child need genetic testing, and what does that mean for our family?,What are the long-term risks of the Fontan circulation, and how will we monitor for complications?,Are there any activity restrictions my child should follow, and will these change over time?,What support services — such as feeding specialists, developmental support, or mental health resources — are available for our family?

Common questions about Mitral atresia

What is Mitral atresia?

Mitral atresia is a rare and serious heart defect that a baby is born with. In this condition, the mitral valve — the valve that normally allows blood to flow from the upper left chamber of the heart to the lower left chamber — is completely absent or severely underdeveloped. Because blood cannot pass through this valve, the normal flow of blood through the heart is blocked. This forces the heart to find alternative pathways to keep blood moving, which puts enormous strain on the heart and lungs. Babies with mitral atresia often have other heart defects at the same time, such as a hole betwee

How is Mitral atresia inherited?

Mitral atresia follows a multifactorial inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.

At what age does Mitral atresia typically begin?

Typical onset of Mitral atresia is neonatal. Age of onset can vary across affected individuals.

Are there clinical trials for Mitral atresia?

Yes — 1 recruiting clinical trial is currently listed for Mitral atresia on UniteRare. See the clinical trials section on this page for phase, sponsor, and site details sourced from ClinicalTrials.gov.

Which specialists treat Mitral atresia?

1 specialists and care centers treating Mitral atresia are listed on UniteRare, sourced from ClinicalTrials.gov principal investigators, published research, and the NPPES NPI registry.